Therapy Update

Since my last update about the status of Caden's therapies, we have had more answers to prayer. I was able to talk to a friend of mine who is a pediatric PT and is a provider through Alta CA Regional Center where Caden receives his therapies through. I asked her what some of the families were doing that she worked with. Just trying to find out if she had any suggestions for me of ways to get things resolved. She asked if I had already talked to my insurance company about whether or not they cover these services. I told her I had but she asked if I had specifically said the therapies were for developmental delay. I hadn't used those specific terms but I had made the assumption that they knew that. She suggested I call them again and ask about that.

Great suggestion! I called my insurance company and asked our representative if it made a difference if the therapies were for developmental delays and she said they didn't cover ANYTHING related to that! I realize for most people this isn't the answer they would want. But in my case, that is EXACTLY what I wanted to hear. So, I needed to provide a letter of denial to Alta to show them that my insurance doesn't cover these things and then they would continue to cover it. However the only form of “denial” I had was the page from our health plan handbook that specifically stated it didn't cover services related to developmental delays. I emailed that to our service coordinator and asked her if that would be sufficient. And, I also said I wanted to have an answer in writing so I had some proof of what I had been told.

It took several days, but she ended up emailing me back with confirmation that her supervisor had agreed that this constituted a denial and they had funded his OT. This was amazing news! That means, his PT and feeding therapy will be able to continue with his amazing therapists without interruption. And, he is scheduled to start OT at the same clinic next week. I am absolutely thrilled!

I am still fighting the battle for speech therapy. Every time I ask our service coordinator about it, she ignores me. I think she's hoping I will drop it. But I am not willing to do that. Caden needs to have it to help him learn to compensate for the physical vocal cord defects he has. So next week I will be following up on that and we'll see where I get.

In the meantime, I am immensely grateful for where we are at and that Caden can get the help he needs. Don't get a Mama fired up because that's when things start to happen. I'm in fighting mode and am not about to give up! God is with us through everything and I know he will not leave us. Because I am posting on Thanksgiving, I want to say how thankful I am for the progress we've made.

IFSP

On Tuesday, November 10, we had Caden's Individualized Family Service Plan (IFSP) meeting at our house. This is to talk about the services he is receiving through the regional center. In attendance were Caden's nurse case manager who is provided to us through our insurance (I have previously mentioned how awesome she is), our service coordinator at Alta CA Regional Center and her supervisor, a nurse from SCOE (Sacramento County Office of Education), and Caden's infant development specialist.

One of the first things we talked about was the fact that they couldn't make an exception for Caden in terms of not billing our insurance for his therapies. This was something I had posted about a couple months ago how we had a huge answer to prayer that they were going to make an exception since he is in immediate danger of hitting his lifetime maximum with insurance and he is only 10 months old! I was crushed! I had ben counting on this and now I was told it couldn't happen. Actually what they told me is that they would take his case to their Best Practices Committee and have them make a determination. I have to assume they will say “no” or I'm setting myself up for disappointment.

So, as it stands currently, I have 90 days in which to get insurance ready for billing for his therapies. However, it's not quite as simple as that. Caden's PT isn't set up with insurance yet. They are in the process of being added to the network, but it hasn't gone through yet. This is the case with many providers for early intervention services. They didn't have to be on insurance networks before because they were getting reimbursed through Alta. But now everything has changed and they are scrambling to get on provider networks. But the process is taking a long time. So even if I wanted it to go through insurance, we couldn't do that with our current PT. That would mean we would need to change therapists. I do NOT want to do that! We have the most amazing therapist who truly loves and adores Caden AND is an AMAZING PT! I have encountered people from all over who know her through various means and everyone loves her and talks about what a good therapist she is. I do not want to lose her.

The other piece to the puzzle is this: currently there is a loophole in the state law that doesn't affect the Infant Development Programs (IDP). Easter Seals has an IDP and it is kind of an umbrella for overall treatment for kids. We currently have a developmental specialist with Easter Seals who comes out twice/month and works with Caden. Alta is pushing me to move all the therapies to Easter Seals and have them cover everything. I am not anxious to do this because it is likely that the loophole will be closed very soon for the IDP's and then I would be back in the exact same boat I am now.

In addition, Caden has had evaluations for OT and speech therapy and in both cases, it was recommended he start services right away. For OT, his fine motor skills are delayed and he needs extra assistance in getting them to where they should be. In the case of speech, he has more than a 50% delay which is a concern in and of itself. However, when you consider that his left vocal cord was paralyzed during the repair of his heart (it is fully functioning now), and his right vocal cord is permanently damanged from the ventilator tube, he is at significantly higher risk for speech and language delay than the average child.

However, I was told at the IFSP that we could not start either of these services for Caden. They said maybe when he was two years old we could look at speech therapy again. I'm sorry, but that is WAY too late! Kyler started his speech therapy when he was 18 months old and I'm glad it didn't start a day later. And, he didn't have the physical problems to overcome with the vocal cords like Caden does.

The meeting lasted 2 ½ hours when normally it would be about an hour. The way it left off is that I would be receiving a Notice of Action (NOA) denying OT services completely. And, they would request a speech evaluation through Easter Seals. And, the things he is currently receiving (PT, feeding therapy, and developmental specialist) would continue as they are for 90 days. That is the length of time I have to get everything set up through insurance. Once the 90 days are up, they will send me an NOA telling me the services will end. When I receive that notice, it has information on it to submit an appeal. Once I submit the appeal, the services remain in place until a decision has been reached at a hearing.

In the meantime, I did a couple more things this week. I contacted Disability Rights CA and told them Caden was being denied services that he needs. This is an advocacy group that provides pro bono legal work on behalf of children with disabilities. They have assigned me an attorney and as soon as I receive the NOA regarding OT, they will get started on my case.

In addition, I contacted my insurance again. I've talked with them several times already regarding what is covered and what is not. But I made some assumptions on what they knew in regards to the reasons why Caden was receiving therapy. So on the recommendation of a friend who is a pediatric PT, I called again and asked if there was any exclusion in the plan if the therapy was for developmental delay as opposed to an injury, etc. To my relief, there is a difference!!! Our plan does not cover any treatment that is for development delays. I got the health plan handbook and emailed the page indicating this to our service coordinator and asked if this was a sufficient form of “denial” from insurance. I have yet to get an official reply back. She said it looked optimistic, but couldn't tell me for sure until it went through her supervisor. I told her I wanted an answer in writing. That way I have the documentation if I need it later.

So, here we are... still unsure of what is going to happen. But if this page from the handbook is sufficient it should solve the problem of our current therapies. We should be able to keep those in place. I'm not entirely sure what will happen with the OT and speech therapies. But believe me, I am willing to fight as much as I need to in order to get Caden the services he needs to grow and thrive. He has been through too much and I am not about to give up now. I know God has a plan and I'm just not sure what it is right now. I keep praying for answers for a clear path to take. So far things keep getting harder and I know Satan is attacking us. I will continue to stand strong for my family and I know God is right there with me because I know he has plans for Caden. Thank you for your prayers about this subject. It has added so much stress in my life and I just want to be able to get it resolved and know that Caden is getting everything he needs.


Pictures of Caden at 10 months old - November 9

Surgery

On Wednesday, November 4, Caden had hernia surgery at UC Davis. We got to the hospital at 9 am and ended up having to wait quite awhile. We had been told he was 2nd case, but he ended up being 3rd case. It was kind of funny because they put him in an isolation room and had us put on gowns and gloves because he had MRSA. We just had to laugh because we are around him all the time and don't gown up. I understand the nurses need to use gowns and gloves because they are interacting with other patients. But when it's our own child and we're not going over to other kids, seems like it wouldn't really matter. But we did what we were told.

Anyway, Caden was quite the trooper. The anesthesiologist said they didn't need to give him Versed because he was so calm he didn't need it. Then when she took him back, she told us later he just lay on the table and looked around quietly while they were getting everything ready to put him to sleep. And she said when he woke up, he didn't fight or scream, he just opened his eyes and looked around. One of my biggest concerns is the intubation, but that went okay and they were able to extubate easily afterward.

Overall the surgery went well and we were glad we didn't have to stay too long after he was out. We picked up the prescription pain meds and then came home. I was glad to know that we had oxygen and a pulse-ox at home so that we could monitor him and make sure he was doing okay. Just a little added reassurance. He's done well since we've been home. A little more tired than usual, but that's not really surprising since he had the anesthesia yesterday. I'm so proud of him and all he has been through. He is so amazing! He was laughing and playing today almost like nothing happened.

At the Surgery Center

Caden playing with Daddy while we waited

Getting ready to take Caden back

Handing him over to the anesthesiologist :(

Post-op nurse, Dannika

I'm happy to be holding my baby again after he got out of surgery!

Caden is sacked out from the anesthesia

Heading out the door to go home!!!

Halloween Celebrations

This Halloween, I let Kyler choose his costume for the first time. His first year, he wore a giraffe costume, the next year, he was a monkey and last year he was a tiger. All the outfits were chosen by me. So this year I decided to let him be involved. He went with me to the store and looked at all the options. The second he saw the Thomas the Train costume it was all over. His choice was made and he would not be convinced otherwise! I had hoped to steer him in another direction, but he would have none of that. And, since I had decided to let him choose, I let him get it. And, I must say, he was a pretty darn cute Thomas! :)

Caden on the other hand, had even less say that Kyler did over the last three years. I didn't even get anything new for him, he just got to wear Kyler's giraffe costume. But, he truly was the most adorable giraffe you ever did see! The only challenge was gettting the two boys to take a picture together. Not an easy task!

For our Halloween festivities, Kyler wore his costume first to the Hearts of Hope day at the zoo, which you've already seen pictures of. Then, he got to wear it again to preschool on Thursday. He thought that was great fun! And, his little friend, Tommy, was Thomas the Train also. Kyler couldn't stop talking about that. So adorable!

Then, on Friday we went to a friend's house for a little party with a couple other kids. She went all out and did such a great job with decorations and food. Kyler had a blast. Although he didn't want to wear his costume while we were there, I got him to put it on for a few minutes. And, finally on Saturday night, Halloween itself, we went to our church. They put on an international food fair, had trunk-or-treat and a talent show. It was a lot of fun. When we got home, we took Kyler over to one of our neighbor's houses because they adore him and wanted to see him in his costume. They opened up a whole new bag of candy and let him help himself to as much as he could fit in his little bag. Of course they don't have to deal with the sugar consequences after-the-fact! But we're glad they love him so much. :)

Overall we had a good Halloween this year. Kyler wants to continue wearing his costume so I told him he can put it on whenever he wants to. Why not? We paid enough money for it!

The cutest little giraffe you ever did see!

Decorating (and eating) Halloween cookies with friends

L-R: Caden, Kyler, Ben, Carly, Grayson & Jonathan

One of the better pics of the boys together

Daddy with the boys

Mommy with the boys-don't you love Kyler's cheesy face?

GI - 2nd Opinion

On Wednesday, October 28, we headed to Walnut Creek to get a 2nd opinion from a gastroenterologist there on Caden's feeding and wretching issues as well as the possibility of changing him to a j-tube. Our GI doctor in Sacramento had suggested doing this as a possibility of reducing his wretching. That was at the end of August, but we wanted to get a second opinion before moving forward and it took us this long to get in with another doctor. We were referred to this one by our cardiologist.

However, by the time of the appointment, Caden's wretching had gotten significantly better. It seemed like once he was able to sit up by himself (right around the beginning of October), that the wretching really seemed to decrease. He went from having up to 20 episodes in a day down to maybe five. It was great. However, we still wanted to talk to another doctor and see what her thoughts were on the j-tube as well as Caden's overall GI issues.

She was great and spent an hour with us going over everything that Caden has going on. It was really nice to have someone take the time to do that. She felt that with the reduction of wretching, changing him to a j-tube would be unnecessary and a guessing game anyway. However she was surprised that Stanford didn't do a gastric emptying scan prior to doing the Nissen along with the g-tube. She highly recommended we get that done now. She said that could be part of the reason for all the wretching if his stomach has a slow time emptying. From what Greg and I could remember, it seemed like there were a couple tests Stanford has chosen not to do because they figured it wouldn't change their decision to do the Nissen, so why waste time and resources on them. But looking back, maybe we should have insisted they do one. Of course, hind sight is 20/20, right?

We are going to tweak his feedings a little bit based on her recommendations. So, at this time, we are not going to do a j-tube and we are going to contact our local GI doctor to order a gastric emptying scan so we can see what that shows. Of course, wouldn't you know that right after we saw the doctor on the 28th, Caden's wretching got worse again.

She suggested another option if the wretching didn't get any better, was to do an endoscopy and use a tool to dilate open the Nissen wrap. Basically stretch it out instead of going in surgically and undoing it. Apparently the surgical undoing is VERY rare and nobody is anxious to do that. So if it was necessary to do something, that could be an option but it doesn't sound very comfortable.

Anyway, we were glad to talk with another doctor to get another perspective. We just wish we could hurry up and get Caden eating by mouth so we could get rid of the g-tube altogether. Of course, he would still have the Nissen so he could still be wretching. Such is life, I guess. We'll keep you posted on any major changes in this area. Thanks for your continued prayers!

Out of curiousity, we were wondering if anyone was praying specifically for his wretching during the month of October since it was so much less during that time. If you were praying for that specific thing in that time period, can you post a comment to tell us? We would love to know if that was a factor. We certainly believe in the power of prayer!

OT Evaluation

On Tuesday, October 27, Caden had an Occupational Therapy evaluation. I knew that his fine motor skills were delayed but I didn't know how much. And, he has some sensory issues that I wanted to have addressed. I am hoping that he will qualify to receive therapy through Alta CA Regional Center, along with his PT and feeding therapy, etc.

We had the evaluation at Bright Start Therapies, which is the same place that he currently receives PT. And, it is also where Kyler received speech therapy. I am hoping that Caden will also be able to do speech there as well.

The therapist was great and spent a lot of time with Caden evaluating many different things with him. In the end, she said he is definitely delayed and unofficially is around a 6-month-old development. She needed to add everything up and complete the report in order to know for sure. She was optimistic that he would receive services but we will have to wait to find out.

We have our official IFSP (individualized family service plan) with Alta on November 10. At that time, we will discuss the results of all the reports as well as how to proceed with Caden in terms of what he qualifies for and where he will receive therapies. I am really happy because our nurse case manager will also be attending. She is the one who really helped us get the exemption for not having PT get billed through insurance. She is such an advocate and is so much more familiar with what is available so I am thrilled that she can be there to back me up on things.

Also, on November 2, a team of people get together at Alta to discuss whether or not Caden will qualify to change from a “Level 1” to a “Level 2”. I am praying that he will get changed because this will qualify him to receive nursing or respite care. This will be a life-saver for us this winter as it will help us keep Caden at home and isolated, away from all the germs. I would appreciate all your prayers on this subject because we really need this for him in order to keep him safe and healthy!

Hearts of Hope Day at the Zoo

On Sunday, October 25, our support group, Hearts of Hope, had a Halloween get-together at the Sacramento Zoo. There were quite a few families that came together with their heart children and their siblings to enjoy the GORGEOUS weather! I took Kyler with me and Greg stayed home with Caden. We are starting to isolate Caden more and more so didn't want to expose him to anything there. So, I took Kyler, AKA Thomas the Train, and we had a great time.

After touring the zoo and seeing all the animals, all the heart families met at the little park in the zoo grounds to have cupcakes. We took pictures of the children who had heart surgeries. There were 8 of them in the picture and between them they had 24 surgeries! It's amazing! These little heart warriors are so incredible. You would hardly know they had been through anything the way they run around and play. What a testimony! I am so happy to have my boys be part of this wonderful group.

Kyler HAD to be Thomas the Train this year!


8 kids and 24 surgeries between them! Talk about being warriors!