Praising God

I am praising God for the amazing, incredible miracles I have heard about just this week. Our friends from Stanford, Justin & Victoria Nelson's daughter Moriah had a heart cath on Monday. They found out the pressures in her heart were NORMAL now when everything leading up to the cath showed they were still too high without any options for treatment. God has certainly performed many miracles in this sweet girl's life.

We also just found out about another family we were friends with at Stanford at the Ronald McDonald House got amazing news this week as well. Their son, Bodie, had a rare, inoperable tumor in his abdomen (stage 4 embryonic rhabdomyosarcoma, a cancer of the muscle). He was diagnosed in May 2008 and underwent intense treatment at Stanford and has been in and out of the hospital. He just had scans done which showed the tumor is completely GONE! They were told the tumor would always be there since they couldn't remove it surgically.

If you didn't believe in miracles before, I don't know how you can deny they exist after hearing stories like this. I am completely in awe of what an incredible, loving God we serve! Prayers do make a difference and I am so happy for our friends who are having such joyful answers to their prayers! :)

Developmental Appointment

Today I took Caden to Sutter Memorial Hospital for a developmental appointment. They have a program in place that monitors “at-risk” children for developmental delays/concerns. This includes preemies, cardiac kids and more. Typically in the first three years, they see them 3 or 4 times. We saw them once last summer and this was his second visit.

During the visit he sees a psychologist who tests him for cognitive ability and observes his current skills. Then he sees a nurse practitioner who weighs him, measures him, checks his reflexes, and talks about his overall health, etc. Then the last person we see is a social worker who assesses the home environment, social support and provides any help with necessary resources.

When we saw the psychologist she went through her series of testing objectives and seemed to be impressed with what he could do. There was a few things she couldn't test him for in his age category because it involved crayons and pencils and he wanted nothing to do with them. He just threw them on the floor. (I have to say that my 4-year-old was, and is, pretty much the same way even now!) But even without that, she said cognitively he was pretty much age-appropriate! For us that is pretty big news. Anytime Caden is “age-appropriate” in anything, I do a little dance. :) I don't get to do that dance very often by the way... ;) She told me when she reviewed his file before we came in, she wasn't expecting him to do very well. I agree, on paper, Caden doesn't look very good at all. But when you meet him, he sure is incredible!

The nurse practitioner did her weights/measurements and we discussed several things. She was a little concerned about his small size (same as Dr. Davies, see my recent post about our GI visit). However, not so concerned that she was raising any red flags. But she did want us to monitor him and make sure he picked back up on his growth curve. She told me she thought our visit was almost a formality because she said she could see we were so on top of things already there wasn't really anything for her to suggest or recommend. She said it was clear Caden was receiving the best care possible because of how well he looked. That was a nice compliment for me.

When we met with the social worker, we talked a bit about home life, if we had the support we needed, etc. I told her I thought we were doing well with that. After discussing several things she told me she thought Caden was lucky to be born into our family where it was obvious we were doing everything we could for him. Again, an affirmation like the one from the nurse practitioner.

As Caden's mom, I don't do things for him or fight for him simply to get affirmation from others. I do it because he deserves it. I love him more than words can say and am so proud of him and how hard he works. He is my hero and I will always advocate for him and make sure he has the best I can provide him. I think that is what most moms do for their child. However, I don't think moms get enough credit for what they do. So when someone goes out of their way to recognize what we do, I think that is special. It made my day and filled my cup so I have more, renewed energy to continue fighting for Caden, whatever he may need.

So, I'm assigning everyone homework: Tell a mom you know what a great job she is doing. It will mean the world to her. :)

Shriner's Update

So I have to post a follow up to my previous entry about Shriner's. As I mentioned I was frustrated with the the appointment time being before the staff was actually there to check us in and the incorrect information about going straight to x-ray instead of checking in first. I really didn't give it too much thought after I posted the entry.

Then, yesterday afternoon my cell phone rang: it was an administrator at Shriner's. She told me her name (which I have already forgotten!) and explained that someone forwarded my blog to her. She said she had never read a blog before and mine was the first. She said she was following up on my comments about my experience the day of our appointments.

As we talked, she told me she had already talked to the people in charge of answering the phones and told them they needed to make sure to let everyone know when they called that they have to check in first and can't go straight to x-ray. (The receptionist in x-ray told me I was not the first person to come in and tell her they had been told this on the phone.)

Then she went on to tell me she had spoken with the unit manager in the check-in area. She let him know if they have staff meetings (or anything else), there needs to always be at least one person there to check patients in.

She was extremely apologetic and very nice about the whole thing. She said she appreciated my feedback even though it was in an unconventional way (via my blog). But she really wanted to assure me steps were being taken to address the problems I faced so others did not have the same frustration. The call left me with very positive feelings about Shriner's and the way they do business and resolve issues. I was very impressed with their initiative to follow up on the problem even though I hadn't addressed my concerns to them directly.

So, if you need to go to Shriner's for anything, be assured that your voice does count. I was taken a little off guard by the phone call because I wasn't expecting that. But, the internet certainly makes the world a smaller place. Thank you Shriner's for caring about quality and your patient's feelings and concerns!

GI Compliment

On Wednesday, I took Caden to a follow-up appointment with his GI doctor. The doctor and her dietitian haven't been super supportive of me doing a blenderized diet (BD) with Caden but they were “allowing” me to do it without much of a fight.

We met with the dietitian first and I went over a basic recipe for Caden with her. She seemed somewhat impressed as she made notes about it. Then she asked how it was working for me to do the BD for him. I told her it was working great and I was really happy to be providing my son with real, healthy, whole foods. :) After some more discussion, she said she was slightly concerned that he wasn't gaining weight very well. If he was following his curve, even if he was small, they wouldn't be concerned. But because he was dropping off his curve slightly that was causing her some concern. In her words, she was “mildly” concerned about it but she was willing to give us more time on the diet before “encouraging” us to start supplementing with formula (not going to happen!).

Her suggestion was to increase his daily calorie intake so as to hopefully increase his growth. We just want to see him on an upward trajectory. I agree that is what we want and I told her I would be willing to sit down and work on his recipes to make sure we increase calories.

After waiting awhile longer, the doctor finally came in, followed by the dietitian. The doctor came right up to me and said, “Are you going to start selling this stuff?” referring to the BD. She told me how impressed she was with the quality of the nutrition he was getting in his food. :) HUGE compliment coming from her, believe me!!! It makes me happy to know that I am giving Caden good nutrition with natural, whole foods. I know formula has it's place, but it wasn't working well for Caden and it certainly wasn't providing him with the same nutrition that real food does. I know some orally eating kids at 18 months old are still on formula, but it's usually not the only thing they get. They are also eating regular food. So it doesn't make sense to me that he would be getting 100% formula. And if we can help it, we would like to keep him off of it entirely. We should be able to do that with BD, we just have to tweak the recipes.

I'm so happy that Caden's GI doctor was willing to recognize how healthy he is. She even commented on how “fantastic” he looks. I know it has a lot to do with his diet. He used to have pale, pasty skin and now he has more natural color to him and he is bright-eyed and curious about everything. What we eat makes a huge difference in how we feel so of course that would be true for him as well. Now we just need prayers that he will start steadily gaining weight on BD so he can be healthy and strong.

Shriner's

On Tuesday this last week I had to take Caden to an appointment at Shriner's Hospital regarding his scoliosis. This was our 2nd visit, the 1st being in June of 2009. It started out a little frustrating due to scheduling. We were assigned a 7:45 appointment for x-ray followed by an 8 o'clock doctor visit. I called the office the previous week to confirm when I needed to arrive. They told me I needed to be there at 7:30 and to go straight to x-ray. I double-checked that information with them to make sure I had heard correctly because I remember last year we had to go through a check-in process first. They assured me that was the case.

So I woke Caden up early and loaded him into the car. Thankfully I didn't have Kyler to take with me as well! We arrived at 7:30 and went straight to x-ray. When I got there, the receptionist commented on how early I was and I told her I was just following directions. But when she tried to look Caden up, she said we hadn't checked in yet so I needed to go take care of that first. Grrrr, frustration!

I went back to the check-in area only to be informed by a volunteer that the staff in that area wouldn't be there until 8 due to a staff meeting. Seriously??? So I had to sit there and wait for half an hour with Caden before we could even check in. :( I was not happy about that!

Finally got the x-ray taken and went back to wait for the orthopedic doc. He reviewed last year's x-ray with the one taken that day to see if the scoliosis had progressed or stayed the same. He said the degree of curvature in 2009 was 17 degrees and this year is was 20 degrees. So, on the surface it appeared to have gotten worse. However, he said in his opinion there had been no change due to 2 factors: 1) The technique was different. Last year he was laying down and this year he was standing up for the x-ray. Standing is the preferred method if possible because it shows the scoliosis at it's “worst” due to gravity. 2) There is a 3-5 degree rate of error with imaging technology. So, because the degree change was 3 degrees, he said there was no change and this was a good thing.

He ordered an MRI of the spine to be done in the next 6 months so we are in the process of getting that approved and in place at UC Davis. And, I learned there is a difference between congenital scoliosis (what Caden has) and idiopathic scoliosis (seen more often in older children). According to the doc, with congenital scoliosis the spine is more stiff and is more likely to require surgery at a younger age. He said right now he is putting the odds of Caden needing surgery at 50/50 but he will be able to say more specifically after he has the MRI. In addition, the surgeries for congenital scoliosis are done at a much younger age; typically between the ages of 3-5. I had always thought if he did need surgery for this, it would be when he was much older and something I didn't have to think about until later. But I now know it will be in the next few years if he needs it. :(

Right now we wait for the pre-certification process with insurance and scheduling the procedure. We'll know more sometime in the next 6 months what we can expect down the road. We are praying he will not require another surgery! Poor thing has been through so much already.