Crawling!!!

Last Wednesday during Caden's PT session, he crawled for the 1st time! I have to say that was one of the most exciting days of my life. His therapist sat him down and helped him transition into a quadruped position. I was sitting about 2-3 feet in front of him. Once he was on all fours, he actually started moving toward me completely on his own without assistance. In the past, he has done some “crawling” with assistance from someone helping move his legs forward. But on Wednesday he did it entirely ON HIS OWN! He did it repeatedly throughout the duration of his session. Now don't get me wrong, he cried and complained about it the whole time. He did not enjoy the experience. But I was so excited that he did it at all.

The only way he would crawl is if the PT helped him into quadruped position and if I was sitting in front of him. He would then crawl to me and climb up on me in order for me to “save” him. I gave him a hug, he stopped crying, and then I handed him back to the PT to do it all over again.

I have been unable to get him to do it at home because if I move him onto all fours facing away from me, he has no motivation to move forward. He doesn't try to get to toys. But if I put him on all fours facing me I can't keep him in that position, he just pushes back to sitting. So, it's hard. I really need two people in order to practice at home. He has PT tomorrow morning again and I am really hoping he will crawl some more. Maybe the more he does it, the more he will like it and will start to do it on his own.

It's all a process. But we really want him to crawl because there are so many long-term benefits that come from it. It helps with motor planning, coordinating movements between the right and left sides of the body. Weight bearing on the arms helps develop the arches in the hands which promotes better fine motor skills. For normally developing children these things happen naturally so it is taken for granted. But there are so many things that need to happen for development further down the road. We are really working on getting him to crawl because we want him to have the benefits that come from that. In the meantime, we are praising God for every little baby step Caden takes forward. He is truly amazing!

Cardiologist Phone Call

A couple weeks ago I got a phone call out of the blue from Caden's cardiologist. I was really surprised because we hadn't seen him recently nor did we have any appointments coming up soon. And, it is rare for him to call me on the phone. So I really was not expecting to hear from him.

He told me they had been discussing Caden's case at a cath conference and there weren't sure what to do about him. I had no idea he was even being discussed since his heart function is great. But apparently they were talking about his pulmonary hypertension when he is at elevation. If you remember, when we were in Tahoe last October, Caden went into respiratory distress most likely because of the altitude. So, we were told Caden was not cleared to fly or spend time at elevation.

For the most part this is fine. But it is kind of inconvenient because we have to drive for all vacations (which unfortunately rules out Hawaii...) and we can't go camping in Tahoe which we really enjoy doing. :( But it is a sacrifice we will make for Caden's health.

At any rate, the cardiologist said he would like to learn more about Caden's situation. Most of the cardiologists in this area have not dealt with this particular issue. But we are grateful that our cardiologist did his training in Denver at elevation so he has more knowledge in this area. That being said, he would like to do another heart catheterization on Caden and simulate him being at altitude and see how his body responds. If he has some pulmonary hypertension or goes into respiratory distress this will give them more information on how to deal with it.

That being said, it seems like an exploratory procedure to me without any guaranteed benefit. Because of that we really don't want to do it. I don't want to put Caden through another procedure unless it is necessary. The poor thing has been through so much. And caths are not without their risks. We don't even know if we'll get any useful information out of it.

So where does that leave us? With a lifetime of avoiding air travel or vacations above sea level? That is kind of restricting... So I asked what our other options would be. In talking to the cardiologist he said that since we have a pulse-oximeter and oxygen we could attempt to take Caden on a weekend trip to Tahoe and see how he responds. In October we didn't have the pulse-ox or oxygen so we didn't realize how bad off he was until it was too late. This time around we would be able to monitor his saturations and immediately put him on oxygen before things progressed. And we could drive down the mountain right away.

Our plan right now is to take a weekend trip to Tahoe June 4-6. We have a hotel room reserved and will monitor Caden with the pulse-ox the entire time we are there. Good thing it has a battery so we can actually get out of the hotel. If he still has a problem with his saturations and we have to drive down the mountain we have a Plan B. Plan B says that we will attempt one more trip up to Tahoe, this time taking Sildenafil (also known as viagra) which is used for pulmonary hypertension. Caden was on this when we brought him home from Stanford but he hasn't taken it since last summer. The hope is that maybe taking this medication prophylactically will help prevent the hypertension and allow us to fly or stay at elevation. Then he would come off of it when the trip was over.

If neither of these plans work, our last resort is to do a cath. :( Caden is just getting more aware and more anxious around doctors and I don't want to subject him to unnecessary procedures. So keep us in your prayers the first weekend in June as we try an elevation “experiment” with Caden. We are so hopeful he will outgrow this!

Warm Water Therapy

A few weeks ago I contacted our service coordinator at the Regional Center and asked if we could get Caden into warm water therapy. Easter Seals offers this program. Basically it is physical therapy in the water and I've heard incredible things about it so I was excited to get Caden into it. Our service coordinator said she would get it approved right away. Easter Seals contacted me the next week and we decided on a day/time that worked. I was told there might be a long waiting list so I was thrilled when they told me he could start on April 30.

Last Friday we took Caden to meet his therapist. They didn't get in the water because they like to be able to spend a little time with the client before jumping in the water with them. Caden has a male therapist which is a first for him. And he is normally very anxious around new people but he seemed to do okay with the PT so that was nice. They spent the session exploring the indoor therapy space and getting to know each other. Since Caden did pretty well with him I was optimistic that his first session in the water would go well.

Well, last night Caden had a bad night which is very unusual for him. He normally sleeps 12 hours or more straight through without a peep. But he was really fussy and unhappy during the night and I had to change multiple diapers which is also unusual at night. And he woke up for good on the early side as well. Things were not off to a good start. :( I got him ready and we headed to Easter Seals to get in the water. We arrived early and were ready to go when the therapist arrived and got set up. He came over and got Caden who immediately decided this wasn't a good thing.

The PT walked a few steps down a ramp into the water and sat down. He sat Caden down on the ramp in about 4 inches of water. He has more than that during bath time so that shouldn't have been a big deal. And since the water is warm that shouldn't have been a problem either. But I think he was just completely overwhelmed with the whole experience and he decided that he did NOT want to be there or participate in whatever torture this PT had in store for him. He just cried. I left the pool area (I could still see him through the glass but he couldn't see me) in hopes that if he didn't see me he would settle down and not try to get me to “save” him. But when that didn't seem to make a difference, I came back in and sat down on the side of the pool with him. With me there, he managed to tolerate about 15-20 minutes of sitting on the edge with his feet just touching the water. He played a tiny bit with a ball throwing it in the water and leaning to pick it up. But after awhile the PT thought we should just call it a day. He didn't want Caden to have really bad associations with the water on the first day. So we cut the session short halfway through and went home. Next week the PT wants us to start with 15 minutes inside before going into the pool to see if that makes a difference.

I am really excited about this therapy and think it has the potential to help Caden progress quickly. And, I think he will adjust, it is just going to take him time. It usually takes him a few weeks to really get used to a new person and a new situation. I am optimistic that he'll do better next week. And, I'm sure if he sleeps well the night before that will help! I'll try to take pictures next week to post. :)


P.S. Nurse #1 is back and things are going pretty smoothly. Caden is still adjusting to the constant change in care but I think he's doing better. And, I know that this nurse actually cares about Caden and his well-being. This isn't just a paycheck for her. She loves what she does and it shows. Thanks for your continued prayers!

Nursing Care Drama

So I haven't said much about the situation with Caden's nursing care. I guess that's because sometimes I feel a little weird about having a nurse in the first place. It's supposed to take some of the stress out of my life. However, it's actually been adding a whole different kind of stress into the house.

When a child qualifies for nursing care, the agency typically says they can't get a nurse for less than 40 hours/week because the nurses want to work full time. I can understand that perspective, but yet I really didn't think I needed a nurse for that much time! After all, I don't have a very big house and sometimes I like to have my own space to relax in without someone else around. But apparently we didn't have a choice.

So, in the middle of February, we had our nurse #1 start. We liked her pretty well. She was very soft-spoken, considerate of the fact that this is our home, LOVES children and you could see that in how she interacted with Caden and overall a nice person. However she has a lot going on in her personal life so she sometimes gets a little distracted and can forget little things. And, for those of you who know me, you know I am very particular and like things done in a specific way. So when I go to look for something after she left, I would never know where to find it. For many things it's not that big a deal. However, when it is your child's g-tube extension and you can't really feed them without it, it becomes a bit more of a problem. At any rate, things were still moving along okay. One of the things I really appreciated about her is that she is a Christian and was constantly singing bible songs to Caden. I love that!

Well, this nurse also happens to be in the military reserves which means she has training obligations and other things she is required to participate in. She had a two-week training scheduled beginning on April 19 and ending April 30. That was fine. We were told by the nursing agency they would be able to get us a temporary replacement during her absence. However, a whole week went by with no one being able to come out. Every day I was told “we don't have anyone today, but tomorrow we have the perfect person coming in to do orientation and we'll give you a call.” I wouldn't hear anything the next day so I would call them back and would hear, “well, they didn't have pediatric experience” or “they haven't worked with babies before.” So obviously I don't want them taking care of Caden if that is the case.

So I was on my own for that week and that was okay. However, the problem came in when I talked to the nursing agency on Thursday and they told me that the nursing supervisor had to come out to do a “re-certification” in order to justify Caden having nursing care and that had to be done by that day otherwise we would have our case discharged. I told them I didn't really feel that was fair to me because it wasn't my fault we didn't have a nurse. They told me I had two choices. We could either be discharged or we could be put on a “hold” status. I said I didn't really like either option but if those were the only two I had, I was choosing the hold status. The idea was that when our nurse came back from her two weeks of military training that she would come back and the case would resume as it was before. I said that was fine.

Then I got a call the following Monday, April 25 and was told that they had a nurse who could come out that day to do an orientation and could work that week. I said, great, send her out. So she came out that afternoon with the nursing supervisor. The supervisor told me they had to re-open my case since we had been discharged the previous week. I wasn't very happy when I heard that since I was very clear when I told them I did NOT want to be discharged. Anyway...

Enter nurse #2 into the picture. First off she seems “ok”. Not great, but ok. I notice that she doesn't seem to be listening to what I tell her because she will ask me a question I literally just answered. For example I will say that Caden takes a nap at noon. Then five minutes later she asks me if and when Caden takes a nap. Things like that made me wonder if she was just overwhelmed with information and she was having trouble remembering it all or if she truly just wasn't listening to what I was saying. I decided to give her the benefit of the doubt to start off.

Things started getting really ugly when she attended a few of Caden's therapy sessions though. The first session she came to was PT. Now, keep in mind that Caden's PT is phenomenal and we LOVE LOVE LOVE her! She is extremely knowledgeable and VERY good at what she does. She is also good at educating and explaining to people why she is doing certain things with Caden. She did a great job telling nurse #2 why we were trying to keep Caden on all fours as long as possible and keeping him out of standing position. (That's a whole other story and if you want me to say more about it, I can in another post.) She also had nurse #2 practice several exercises with Caden on the large exercise ball so that she would be able to do these at home. It became clear very quickly that nurse #2 was not “getting” it! In fact at one point she completely let go of Caden while he was on the ball. Now I'm pretty sure that anyone with common sense wouldn't think that was a good idea. Hello??? An almost 16-month old baby on top of a large round ball without support??? Call me crazy but that just seems like a no-brainer! So things weren't going great.

The next day she came with us to Caden's OT session. Caden's OT is also VERY good at what she does and we love her as well! She works at the same place as the PT. :) Caden has some sensory issues that she wanted to address with a brushing/joint compression technique that shows good results when done properly. Our OT says that if this is not done correctly, it is not only ineffective but can also be detrimental to children. So I was paying very close attention while she showed me what to do. She had me practice on her so she could make sure I was using the appropriate pressure and hand positions. She said I did very well; better than most people the first time. So I gave myself a little pat on the back. :)

The OT asked nurse #2 to practice on her. Nurse #2 responded by saying, “I already know how to do it.” Our OT replied that she did NOT want nurse #2 doing the technique on Caden without her approval of it first. So she half-heartedly went through the motions. I was thoroughly unimpressed! And, the other thing that about sent me through the roof during the session happened before this. As the OT was explaining the background about the brushing/joint compression, nurse #2 took Caden and stood him up and was holding on to him telling him, “Go on, take a step. Take a step to Mommy!” This is in COMPLETE opposition to what our PT had told her the day before!!! Our OT gave me a look of horror before firmly explaining to nurse #2 that we do NOT want him standing right now and went into all the reasons why. Oh how I love our therapists! They are looking out for Caden's best interest as our nurse clearly was not.

The icing on the cake was when Caden had his speech therapy testing right after OT that day. Normally I do not go in the room when the therapist works with Caden for speech because it's too distracting. But since she was doing testing in order to write up a report on his progress she needed me to be present to ask me questions. That meant that we all got to go in: me, Caden, Kyler, nurse #2 and the speech therapist. About halfway through the session, nurse #2 announces that Caden said “ducky” twice earlier in the day. I find this extremely hard to believe since we can't even get him to consistently repeat “duh” as the beginning sound for “duck.” The therapist (again, we LOVE Caden's speech therapist and she also works at the same place as the PT & OT) gave me a weird look but kind of ignored the nurse. So nurse #2 gets down on the floor next to Caden and starts saying “Ducky. Ducky. Say ducky” over and over and over again. Even if Caden could say “ducky” she wasn't giving him an opportunity to respond because she was pummeling him with words. I wanted to scream at her to get away from him. Thankfully she backed off and left him alone for the rest of the session.

So, the discussions began with the nursing agency. I told them I wanted nurse #1 back when she was back from her training. They told me they wanted me to have both nurses sharing Caden's care. This would mean that one would be here two days/week and the other would be here three days/week. I thought maybe I could put up with nurse #2 if I only had her two days/week. But then when I talked to the agency about it again, they told me that nurse #1 wanted to have a night shift and they had a family that needed a night nurse so she wouldn't be coming back to work for us. So they thought it was great because then we could keep nurse #2 with us full time. I, however, did not think this was fantastic news at all. In fact I told them I really wasn't interested in that. They suggested I think about it over the weekend and get back to them on Monday. So, Greg and I talked about it a lot over the weekend and I talked to some friends about it as well. The consensus was that nurse #2 did not have Caden's best interest in mind and we needed to keep that our priority. Monday morning I called the agency and told them we did not feel that nurse #2 was a good fit for our family. They started trying to pressure me into keeping her because they didn't know how I could know after only a week that she wasn't the right person. So I told them she wasn't listening to me and the things I was telling her and she really wasn't listening to the therapists and what they were saying. This was a HUGE problem and was not acceptable therefore we did not want her back. I told them I would rather do it myself than have nurse #2 in my house. I told them I would go without a nurse until they could find someone else to come out. So that is where we left it on Monday.

Tuesday came and went with no word which wasn't surprising. And then Wednesday (today) they left me a message telling me that nurse #1 is able to come back to work for us. I asked them what happened since she wanted to have a night shift. I guess it wasn't working out quite as well as she had hoped with her own family so she decided day shift was better after all. So, apparently, tomorrow morning nurse #1 will be back to work with us. We will see how it goes. Hopefully things will go smoothly. Poor Caden is starting to show some of the stress with all the changes recently and I think he really needs the stability in his life.

The label of the post says it all, I think... we've just been dealing with nursing care drama! Quite honestly I am tired of all the drama in our lives. I would really like to have a quiet, boring life. That sounds pretty good right now! In your prayers you can request for us to have a nice, boring, drama-free life!

Fighting...

I have gotten a little discouraged lately because I have been fighting some battles on Caden's behalf and have felt like I've been getting nowhere. There were days when it felt like nothing was going our way. It is so easy to give up in defeat. But then I would look at Caden's sweet smile and know that I had to keep going. It is for his benefit. God is good though and things happen in His time, not mine!

So, finally, we received some really great news! First of all, I know I have mentioned that we have been trying to get insurance authorization for Caden to have intensive feeding therapy through Clinic 4 Kidz. They have a 96% and higher success rate of getting kids off g-tubes and eating orally. It is a higher percentage the younger the child (they work with kids up to 12 years old). So we are anxious to get Caden going. There is an 8-month waiting list and we have been on it for 4 months. Our time should come up at the end of August. But in the meantime, we have spent the last 4 months going in circles with insurance and doctors trying to get authorization for them to pay for this program as it is extremely expensive!

For a long time they were saying they couldn't see any reason why they wouldn't pay for it. However, after doing a courtesy review, they submitted an official letter of denial saying it wasn't medically necessary. :( I was so frustrated! So, I talked to Caden's GI doctor's office again because they are the ones who made the referral. The dietitian at that office was finally able to make contact with the medical director at Blue Shield and convince them that this is medically necessary. They approved 4 weeks of services! That is FANTASTIC news! Unfortunately there are a few complications with that as well. If you'll remember I just said we aren't supposed to start until the end of August. That is more than 4 weeks away... The 4 weeks will be up on May 26. So at this point, we are hoping we can get the evaluation done in that time frame and then hopefully they will authorize the actual therapy services again when those start at the end of August. I can't even tell you how many times I've gone in circles talking to different people. It's exhausting! But, I am absolutely THRILLED to be at this point. I know God is working for good and things happen in HIS timeframe, not mine. But I tend to get a little impatient.

On another front, we have been receiving respite care services. For those who aren't familiar with this, it is childcare provided through UCP Family Respite Services. UCP stands for United Cerebral Palsy. They provide free childcare for children who qualify. It is paid for through Alta California Regional Center who also pays for all of Caden's therapies. Anyway, I talked to our service coordinator at the regional center a few weeks ago and she informed me that because we now have nursing care for Caden, we are no longer allowed to have respite care. She said it was her mistake that we have had both for the last couple months. I was really disappointed because the two things serve different purposes and I didn't want to lose the respite but at the time I didn't think I had a choice.

Then I started talking to people. Other families who have been through this with their kids. They encouraged me to fight. They said I needed to ask for a copy of the policy or law that says we can't have both. And, if they still continued to say that I can't have both, that I need to request a Notice of Action because I needed to take that to Disability Rights California. They provide pro bono legal help for families with kids with disabilities. I was in touch with them last fall when the regional center was denying OT and speech therapies. As soon as the regional center found out I'd been working with Disability Rights California, we were authorized for Caden's therapies two days later. Funny how that works!

In addition to talking to other families, I called the Warmline Family Resource Center. They also provide answers to questions regarding to the services offered by the regional center. They are very well versed in the Trailer Bill language which outlines services offered by the state of CA. When I told them I was being told that I couldn't have both nursing and respite care they said absolutely not! They told me the two things were completely separate. First of all, funding for the nursing care comes from Medi-Cal and the funding for the respite comes from the regional center. So since the money doesn't come out of the same “pot”, they said it shouldn't matter if we had both. In addition, they said the two things serve completely different purposes which is exactly what I said. So they said the same thing as the other people I had talked to. They said to ask for a copy of the policy that says I can't have both and ask them what changed in the Trailer Bill language which would preclude us from having both. So, after talking to them, I was set to FIGHT!

Let me give you a little background on how we use the two services and how they are different. Nursing care helps us keep Caden home and away from germs. It allows me to cook, clean, do laundry, etc. and know that Caden is being cared for. I am able to take Kyler to/from preschool without taking Caden and exposing him to all the germy 3 & 4 year olds. And, because I never have enough time in the day to do all the homework from Caden's therapy sessions, the nurse is able to devote her time to doing that. So in short, nursing care allows me to continue to run my household and still have Caden have all the therapy he needs. But don't get me wrong, I still have to drive Caden to/from all his therapy and doctor appointments and participate in the sessions as well. I am very involved with his daily care, it just takes a lot of the stress out of it.

Now respite care is different. UCP will watch siblings as well (nursing care only watches Caden). So, this allows me to get out in the evening, it allows Greg & I to go on a date. It allows Greg & I to take Kyler out and do something special with him. It is what gives us a true break! This is something nursing does not do.

So, I contacted our service coordinator and told her I wanted a copy of the policy and a Notice of Action because I was pursuing this. I received an email back from her telling me that they were allowing me to keep my services while they “clarified” the language on the Trailer Bill. Respite hours are provided by quarter and we have 90 hours/quarter that we can use as we choose. So, at this point, we have won another battle. But I have since heard from our service coordinator and she is still trying to take the respite away from us but it will be after this quarter. We will see. I'm not done fighting yet!