Intensive Feeding Therapy

When we took Caden to see his GI doctor right before Christmas she told us she was going to refer him to an intensive feeding therapy program called Clinic 4 Kidz with Dr. Patel. This is a very expensive program and apparently it is not easy to get it approved through many insurance companies. But it is an in-home treatment with a very high success rate (96%) of getting kids to eat by mouth. Each treatment plan is tailored specifically to each child.

Once insurance has authorized services, Dr. Patel comes in and does her initial evaluation and give us “homework” to work on until our time comes up on the waiting list (there is currently an 8-month wait). Caden was put on the list the end of December, so by the end of August, hopefully we can get started. When the team of case workers come to start therapy, they come in for 5 days straight for 10 hours/day! Then, after that, they return for 2 days every month for 3 months, followed by 1 day every month for 3 months. And, over time, they reduce the frequency of their visits.

I started the initial legwork to find out whether our insurance will cover this or not. The initial response was a resounding “no.” They said they didn't think there was any reason why they would pay for us to have therapy to change how our child eats. Apparently they have never dealt with a child with feeding issues or g-tube dependency! This could save them money in the long run if we don't have to pay for the monthly feeding tube supplies. It's just really frustrating!

But I talked with insurance again yesterday and the person I normally talk to transferred me to someone else. I gave her the billing codes used for the program to see if they were covered. She said they weren't codes that were denied or ones with strict policies involved. From her perspective, she thought it looked like it would be something that would be covered without prior authorization. But she said the person I normally talk to would need to make final confirmation regarding medical benefits/policy. So, I need to call her again next week and hopefully we will have more of an answer.

In the meantime, I had asked our GI doctor to provide a letter documenting medical necessity for the intensive feeding therapy. They called me yesterday and told me I could pick the letter up. When I read it I was very disappointed in its content. I don't think it spoke to the therapy being medically necessary at all. I will not use that to submit to insurance. I am going to call the office back on Monday and ask them to do it again.

Another great thing about being referred to this program is I got connected with a feeding support group. This is an area I have felt very isolated in. Feeding issues are really emotional for me and the thing I stress about the most. So to be able to connect with other parents who “get it” is a HUGE thing! In fact, I talked to one of the moms on the phone on Thursday and it was such a relief! We have many of the same doctors and have experienced many of the same feelings. She also told me to have the GI doctor copy the majority of the letter of medical necessity that they wrote for her son to appeal their insurance. She said it was really well done. When I call their office back on Monday I will ask them to do that.

And, tomorrow, I am meeting up with another mom to talk about our kids feeding issues. I am just so grateful to have found this group. I have felt so alone in this area for so long and it's really discouraging. So things are looking up. I definitely would appreciate prayers that we can get this intensive feeding therapy program approved through insurance. We are really motivated to get Caden off the g-tube and eating like a normal child. I'll keep you posted.

Caden's Birthday Celebration

A week ago we celebrated Caden's 1st birthday. Reflecting on the last year is a little overwhelming. There are so many emotions, both good and bad! The immense joy of Caden being born followed by the incredible lows of him having 5 surgeries in a 5-week-period and spending the first 8 weeks of his life in the hospital. Then the amazing joy of bringing him home! The year continued with it's roller coaster ride of emotions. Caden had periods of great health followed by various procedures, surgeries or hospitalizations. And the cycle continues. Thankfully though he is doing amazing right now!

On Saturday, January 9, Caden celebrated his 1 year birthday! That is a milestone he wasn't expected to reach, according to almost all the doctors we saw during my pregnancy. We were advised to terminate the pregnancy because he would not live after he was born. They said he didn't have a chance at life. We are so grateful we trusted in a higher power and allowed God to intervene in Caden's life. Our faith in Him is what has gotten us through everything and will continue to sustain us over the next many years ahead.

On Sunday, we had a party with immediate family. Greg's parents, Greg's sister and her fiance were all here. (Most of my family was out of the country on a trip to India so they couldn't make it.) We put up a banner and had balloons, and I baked a cupcake for Caden and a big cake for the rest of us. I knew that Caden wasn't really going to be interested in eating his cupcake, but I was hoping we could at least get him to play with it and smear the frosting around.

When Greg set the cupcake in front of Caden with the lit candle on it, Caden reached to grab it and everybody in the room shouted and scared him half to death. Poor baby cried! It ended up being a little traumatizing for him because of that. But he recovered and ended up laughing a little bit. He really mushed the cupcake and frosting around and got the chocolate EVERYWHERE! With a little help, he got some on his lips, tasted it and gagged slightly. Oh well, we tried!












Caden had a good day. He enjoyed his new presents, had fun playing with family and smearing frosting everywhere. He is such a sweet, mellow, happy baby and for that we are truly blessed! I know the years ahead will not be easy. He has many issues which will continue to be a challenge for him and us. But I know that he is our special gift and I am amazed at how he has touched our lives and the lives of many others!

As I mentioned in my last post, I am working on a special book to honor this momentous occasion. I am compiling all the letters, notes and photos from everyone into a digital book that I am going to have printed. I am going to get two copies so that we can have one and Caden can have one when he gets older. This was the best way I could think to honor this wonderful milestone without exposing him to many germs by having a big party with lots of friends and family. If you haven't already emailed me something for this book, I would love to hear from you. It is not too late! See the post before this one for more details.

Thank you all for your prayers for Caden since before he was born. He is proof that God is real and present in our lives. What a testimony Caden will have as he grows up! I look forward to celebrating many more birthdays with him. :)

Caden's 1st Birthday

As many of you know, Caden will be turning 1 on Saturday, January 9. This is cause for a HUGE celebration of his life. However, due to the time of year and the concern of serious germs floating around, we need to keep Caden healthy. So, we are foregoing a big party which he deserves and will have a very small party at home with family and that will have to suffice.

However, we really want to do something special for Caden to commemorate this momentous occasion. So, we are asking EVERYONE who knows about him to email us at careymcculloch@gmail.com to send your birthday wishes. Here are some ideas if you aren't sure what to say (you can make it as long or short as you like):

Letter to Caden
Reflection or story on how Caden and his story has impacted or affected your life
A prayer for Caden for the years to come
A prayer you have said for him since you first started following his story
Note of praise
Or simply “Happy Birthday”

But whatever you send, please send a picture of you and your family as well. We will be taking everything we receive and creating a special book for Caden and we want him to be able to look back and see the faces of all the people whose lives he has impacted. Thank you so much for all your love and support. We couldn't have done it without you and our faith in God!

Christmas

Christmas was such a wonderful time for us this year! We were able to be in our own home with both our boys and family surrounding us. What a blessing! Last year, we moved into the Ronald McDonald House at Stanford (RMH) on December 16. I was on strict bed rest and we were waiting with uncertainty of how Caden would do once he was born. Our lives were in such turmoil that Christmas was almost nonexistent to us. RMH did such a wonderful job making the holiday special for the families in the house. They had a huge tree and a room full of donated gifts to choose from to give to your children. A local restaurant brought in a special Christmas meal also. They really did a great job with everything. But, nothing can take the place of being at home, or take away the anxiety of having a baby born with medical problems.

This year being able to be at home with both our boys, especially Caden, was such a miracle! We didn't know if that day would even be possible. We enjoyed opening presents and having a family dinner together. A very special Christmas for our family. It's amazing how much things change in a year! God is good! All the time!

Multiple Things

We have had a lot of good news lately that I want to share. Caden had an appointment with his pulmonologist on December 10. When she listened to him, she said his lungs sounded better and more clear than she had EVER heard them. She thought his lungs were growing and maturing. That is fantastic news for him. She said she doesn't want to see him again until the end of February and the only reason she wants to see him then is because she is going out on maternity leave in March and she wants to see him one more time before then.

Then, I was finally able to get Alta to approve a speech evaluation for Caden on December 18 at Bright Start Therapies. This is the clinic where he also receives PT and OT. They have a really wonderful program there with great results. His evaluation went well in terms of him being in a very good mood and cooperating quite well. The speech therapist said he definitely qualified for therapy (his expressino and comprehension are that of a 6-month-old) and said her report would make that recommendation. It would just be up to Alta to decide whether or not to approve it on an ongoing basis.

Also, on the 18th, Caden had an appointment with his cardiologist. Everything went so well and he was so happy with how Caden sounded and looked. He also said Caden sounded better than he had ever heard him. He thought his respiration rate would start slowing down soon if he continued on this trend. And, we don't have to go back for 6 months!!! I can't believe that! That is half of his life. I am so amazed at how well he is doing. What a blessing! And, the other thing I got from the cardiologist was a statement from him saying Caden could medically tolerate PT twice/week. That is all that Alta needed in order to approve that. So, beginning January 1, Caden will be receiving PT twice/week!!! Another victory won! I think Caden will begin to make huge strides in his gross motor development now!

On December 22, we had respite care reinstated for Caden. This is provided to us through UCP (United Cerebral Palsy) based on Caden's diagnosis. We receive 90 hours/quarter of childcare to be used however we choose. This is wonderful for us because it enables me to be able to get out of the house to run errands or do something with Kyler or go on a date with Greg while Caden is able to stay home and away from germs.

And, we are waiting to get our Medical number because as soon as that happens, we will receive nursing care for Caden, up to 40 hours/week. I'm not quite sure what I am going to do with that much time! But we will see how it all works out. The agency has been in touch with me and is starting to recruit nurses for us to interview as soon as we get that number. I'll keep you all posted on that progress.

Then, on December 23, Caden had an appointment with his GI specialist. We talked to her about several things, including speech therapy because she wanted to make sure he received it. I told her Caden had an evaluation the previous Friday and we were waiting to hear whether or not Alta would approve it. She said she believed he needed to receive it twice/week based on his oral issues. She has a member of her team work on this specific thing so she told me to work with her to get whatever paperwork was needed in order to make it happen. That is fantastic news! I would love to have him get speech therapy twice/week. I just needed to find out what Alta was going to provide or not.

Later that morning, I got a call from our service coordinator at Alta telling me speech therapy was approved beginning January 1! I was so excited! According to Bright Start, Caden will be the youngest client they have ever had. Up until now, they said their youngest client was 14 months when they started. So we are breaking new ground. I told the director there that I was more than happy to pave the way for other families with babies who need speech therapy at a very young age due to vocal cord damage, etc. So, once we start going once/week, I will start working on getting it approved for twice/week.

Overall I am really happy with where things are at right now. I had to be willing to fight and not give up. If I was willing to accept “no” from Alta, we would not be where we are today. Caden would not be receiving OT or speech therapy. Both things are very important for him so I am glad I was able to make it happen. I truly believe God's hands are in this and helping us get all the things for Caden that he needs! Even though we have had a lot of stress in this situation, things are finally falling into place. All in God's timing! Thank you all for your continued prayers.