Heart Walk

The American Heart Association is having their Start! Heart Walk on September 18 in Sacramento. This will be the first year that our family participates in it and I plan to make it an annual event. I am so excited about it because we already have 10 or 12 friends and family joining us on the walk. And, the best thing about it is all the money my team raises goes directly to pediatric cardiovascular research. Yay! :) Caden & Kyler's team falls under the umbrella team of Mended Little Hearts of Sacramento and all the money raised under this umbrella goes specifically to pediatric research.

I would love to meet my goal of $2,000 and I have 3 weeks left. If anyone out there wants to join our team and walk with us (we're going to do the 1-mile loop), we would love to have you! If you are able to make a donation it really goes to a good cause. You can do both by clicking here. If it wasn't for funding like this in the past, I probably wouldn't have either of my boys today. I am incredibly grateful for the advances in medical technology that have given my children a chance at life. How can you resist these adorable faces?


If you are unable to join us or make a donation, please keep us in your prayers that we are all safe and healthy for the walk and that the funds raised will be used in the best manner possible. Thank you all!

Zoo

Caden had his first trip to the Sacramento Zoo this week. Monday was “Target Free Admission Day” so we were all free. :) I wasn't able to find anyone to go with us, so it was just me, Kyler, Caden and Caden's nurse. As soon as Caden's PT session was over in the morning, we headed to the zoo.

It was a fun day for both the boys. Anytime we take Caden somewhere in the stroller, Kyler is always complaining that he wants to sit also. Lazy! He has more energy that 10 kids combined, yet he wants to sit! However, in order to save myself from the incessant whining I would inevitably hear, I decided to take both strollers so both the boys could have one. And, since Caden's nurse was with me, I had an extra pair of hands.

Overall, it was a good day. We spent a couple hours there which was enough. Kyler really enjoyed looking at all the animals. I'm not really sure what was his favorite, but he had fun. Caden seemed to have fun as well. His nurse is really good about showing him things and telling him all about them. I love that about her.

By the time we left, it was almost 1 pm and Caden normally takes a nap around noon. Needless to say, he was exhausted! (And, it was pretty hot outside) So, he crashed in the car on the way home which is unusual for him. He woke up when I got him out of the car but thankfully he went back to sleep as soon as I laid him down in his crib. He took a nice long nap that day!




Caden's nurse showing him the Orangutans



I LOVE this pic of my big kangaroo and my baby joey! :)

Cardiology Update

On Tuesday, the 17th, both the boys had follow-up appointments with the cardiologist after their echos from two weeks earlier. In addition both of them had well-child checks with the pediatrician the day before: Caden had his 18-month visit, and Kyler had his 4-year visit (we're a little off on the dates!). This meant that when we got into the exam room at the cardiologist's office, Caden was already freaked out. He had gotten 2 shots on Monday and he was definitely concerned this was going to happen again. He screamed and cried and clung to me like glue the second the doctor walked in the door. I had to hold him the whole time, even during his exam, until the doctor turned to examine Kyler. At that point, Caden seemed relieved he was no longer the “patient of interest” and he relaxed and watched with curiosity.

In the end, the cardiologist said that both boys looked and sounded great. He was very happy with their echos and what he could see on them. Kyler still has a small amount of pressure in his pulmonary valve, but this is what he wants. He doesn't want the valve leaking because once it starts leaking, it will probably have to be replaced. So, at this point, Kyler is doing great and he doesn't have to go back for another year. Caden's echo looked good. They aren't able to get any right-sided pressure readings so that does concern him a little bit. But there is nothing else to indicate there is a problem. Caden will go back in 6 months. If he isn't having any significant respiratory problems at the time, he will just have an office visit. But if there is more going on, then they will probably do another echo at that time.

Overall, a great visit for both boys and I am so relieved! It is so stressful to take the boys for their echos. Kyler is old enough that he does pretty well. But he gets weird about it and starts to “over-think” it in a way. He holds his breath and starts breathing funny which makes it kind of challenging for them to get good views. Caden on the other hand does not like having to lie down on any table in a doctor's office, so getting him to be still and happy for up to 45 minutes is very difficult. I hope it will get better with time. For now, things look good and we can praise God for that!

Backyard Campout

Last Friday night, Greg and Kyler camped in the backyard. This is something Greg's been wanting to do with Kyler for a long time now, but finally had the opportunity. Usually we take a few camping trips each summer, but with Caden, it's been hard to do this since we need to have some medical equipment with us that requires electricity (and we only have a tent). So, Kyler is the one who has missed out and he loves camping!

So, Greg set up the tent after work, then when it got dark, he and Kyler went out and got in. Kyler was so excited about it. I think he like Greg's head lamp almost as much as sleeping in the tent. I'm not too sure either of them slept much that night but they had a good time and created some fun memories. Maybe next year Caden will be to a point where we can actually go camping and we won't have to worry about having oxygen with us “just in case.”

Waaaah!

Okay, to explain myself... After all our nursing drama prior to us leaving on vacation, our regular nurse returned on the Monday after we left and was here that week to help my parents. I was so happy about this! It gave me huge peace of mind knowing she was here to help. She has been here since then as well. Things have been going well. Until today!

Yesterday she told me she is giving the nursing agency her 2-week notice. :( This is where I start to cry! She is not going to work right now because she has a lot of things going on in her personal life and needs to focus her time and energies on those priorities right now. I completely understand her reasons and I support her in them. But, that leaves me without a nurse! I have 2 more weeks with her and then we start over with the search.

So, please pray for us that we can find the perfect nurse for our family. The search is on.

10 Years!

On July 30, Greg and I celebrated our 10 year wedding anniversary! Wow! It is so hard to believe we've been married that long. Time has flown by so quickly that it feels like much less time has passed. I am so blessed to have such an incredible man of God by my side.

To celebrate, we went to Cancun, Mexico for 1 week without kids. I was a nervous wreck about leaving Caden. I hadn't been away from him overnight for more than 2 days (and even with that I was only a couple hours away) and I was really nervous. My parents watched the boys while we are gone. My only concern was if something went wrong with Caden. What if he got sick? What if the g-tube came out and they can't put it back in? What if? What if? What if? I could go on and on. I knew I needed to let go and leave it in God's hands (and my parents). So that's what I did.

Greg and I took a laptop with us and were able to have internet service in our room at the resort. This was great because we were able to talk via Skype with the boys and my parents. This gave me huge peace of mind because I could see how they were doing, Caden in particular. It was pretty funny because Caden was not too sure about seeing me in the small box on the computer screen. The first time he saw me on there, he cried the whole time. Each time after that he did better with it, even smiling and laughing and “talking” to me.

This vacation was truly one of the most relaxing trips Greg and I have ever taken together. We were very intentional about not scheduling too many things. We didn't book anything ahead of time, that way we could play it by ear and do some deal negotiating there. In the end, that was the perfect way for us to do it.

Our resort was wonderful! We had several beautiful pool areas to choose from, in addition to our own private pool on our balcony. Our unit had a separate bedroom and a kitchen area. And, the resort was on the beach so we could walk down there whenever we felt like it.

We ended spending more time in Playa del Carmen than in Cancun. The resort was on the Riviera Maya which is between the two larger cities. We only went into Cancun once (aside from being at the airport) and that was MORE than enough. It was way too commercialized and “big-city”. Playa del Carmen was much more our speed; very relaxing.

We did two excursions. The first one was a scuba diving trip off of Cozumel. So we took the ferry from Playa del Carmen over to Cozumel where we met up with our dive company. We did two dives with them (Palancar Gardens and Tormentos Reef for those of you who might have been there). We enjoyed both of them. On the first dive, the highlight was the beautiful sea turtle eating his meal of coral. The second dive we saw a lot more marine life including large fish weighing several hundred pounds, and some very large lobsters. After our dive we spent a little time on the island before heading back to Playa del Carmen.

The second excursion we did is probably the highlight of our trip and one we will not soon forget. We took a trip out to snorkel with the whale sharks. For those of you who aren't familiar, a whale shark is a very large shark; on average around 30 feet in length. However, they aren't a typical shark in that they don't have teeth. They eat like a whale, eating plankton, etc. Every year between June-September, they migrate to feed in the waters off the tip of the Yucatan peninsula, north of Cancun. This is the largest congregation of them in the whole world and is quite spectacular.

The company we went with took us out there on the boat and we took turns snorkeling right alongside the whale sharks as they fed along the surface of the water. There were 10 passengers on our boat and we went in two at a time with a guide. The sharks are completely harmless to humans but they could be intimidating to someone simply based on their size. They open their mouths and swim along the top of the water taking in all the food. We were not allowed to touch them, but we were close enough to do so. It was an amazing experience that we will not soon forget. I wish we had an underwater camera so we could have gotten pictures when we were in the water with them. But the best I could do was from the boat. Definitely doesn't do them justice!

Aside from those outings, we enjoyed our time at the resort. We sat by the pool or the beach and read and relaxed. We ordered drinks and lounged around. One day we even ordered pizza to be delivered to us at the pool side. Typically they take it to the room but we didn't want to leave the pool yet. They said it was the first time they had done it but they were happy to accommodate us. And, it made our day!

Overall, the trip was incredibly relaxing and rejuvenating. Our lives at home are very busy and very stressful so it was nice to have the time to ourselves with no real agenda. What a great way to celebrate our 10 years together. I love you Greg! Here's to the next 10 years and the ones after that and the ones after that, etc.


I'm standing in front of our favorite pool area :)

Greg with his non-alcoholic pina colada (I had a strawberry daiquiri!) Mmmmm!

This was our day with the whale sharks. Compare it's size to the boat in the background! Truly amazing!

Greg & I enjoying the tropical water off Isla Mujeres

Another gorgeous sunset sky on our last night in the Riviera Maya

Respite Update

I can't remember what I have said or not about the respite care Caden receives. So here's an overview:

Through Alta California Regional Center, he receives respite care. This is non-nursing care for Caden (and they will watch Kyler also) and allows me (and Greg) to get out of the house and have a break. It has been an on-going process with them.

- In August/September last year, Caden received 90 hours of childcare for those 2 months.

- In October, all respite hours were taken away due to budget cuts and Caden not having a diagnosis of one of the following:
-mental retardation
-autism
-epilepsy
-cerebral palsy (CP)

- In November, Caden's neurologist diagnosed him with “Mild CP” which qualified him for respite again.

- By the time all the paperwork went through, it was the end of December before we got the 90 hours to use and all hours are given on a quarterly basis.

- For the months of January – March, Caden had 90 hours of respite to use during that time period and life was good.

- For the months of April – June, Caden was again given 90 hours of respite to use and things started off okay.

- Then in April, I was contacted by Caden's service coordinator at Alta who said that because Caden was now receiving LVN nursing care, he no longer would receive respite and those hours would all go away as of May 3.

- I fought back and told her that I wanted legal documentation of the trailer bill language because I would be fighting this. Nursing care and respite care are 2 completely different things!

- After asking for more clarification from the trailer bill language, the service coordinator agreed to leave our hours in place until the end of June.

- I told her when/if they were going to reduce or take away his hours, they needed to send me a notice of action (NOA) because I would be pursuing legal action.

- At the end of May I received the NOA indicating that Caden's hours were being reduced from 90 hours/quarter down to 24 hours/quarter beginning July 1 so I started the legal process to fight it.

- On July 9, I had an “Informal Meeting” with the people at Alta to discuss the situation and see if we could come to an agreement. We couldn't.

- The following week, on July 15, we met again, this time with an impartial mediator to help in the negotiations. I worked with a local agency that provides pro-bono legal help for families with children with disabilities and the attorney was able to provide me with useful strategies for this process.

- I went into mediation asking for 60 hours/quarter and outlined my reasons why.

- They came back and said they could offer 48 hours/quarter but could not do any more than that.

- Greg & I had decided ahead of time that we would try to get 60 hours but at a minimum we would accept 48 hours.

- Since they agreed to give us 48 hours/quarter, I settled the matter during mediation. We were able to cancel the fair hearing which was scheduled for August 5. The good thing about settling during mediation is that I had a say in the outcome. If you go to the fair hearing, the judge is the one who decides who gets what and it might not have been in my favor. He/she could have decided we shouldn't get any hours and that would have been bad.

So, I settled at mediation for double what they originally offered but half of what I started with. Overall I think I did okay. Now that's one less battle I have to fight.

Nurse Stress

Okay, I am really tired of the ever-changing nursing situation at our house. I know I shouldn't complain but I am tired of things changing on a regular basis. To catch you up, here is the timeline of events:

- On our way home from vacation, July 4, we find out our regular nurse got called to duty (she's in the military reserves)

- For the 1st week and a half we are home, we have no nurse, the agency isn't able to find us a temporary replacement

- We eventually get a temporary nurse for 3 days/week but she complains non-stop about anything and everything and I feel like I have to be out of the house so I'm not around her!

- We also have another temporary nurse for the same time period for 1 day/week. She's mediocre at best but I figure I can deal with her on a short-term basis

- July 20, the nursing agency tells us our regular nurse will be back on August 2! I'm happy!

- On July 30, the agency informs me that our nurse will not be able to return until the end of August. I'm very UNhappy!

- I start to stress out! Greg & I leave for Cancun, Mexico for 1 week on August 8 (we're celebrating our 10 year anniversary!). I was counting on our regular nurse being here to help my mom for the week we are gone

- On August 2, the temporary nurse who has come 1 day/week is here

- Also August 2, the agency calls to tell me they have someone to help us this week but not next. I tell them I HAVE to have someone this week who I can orient for next week because my mom can't do it!

- August 2, the agency calls me again to tell me they have someone for this week and they are working on finding someone for next week who can orient this week before I leave

- The agency calls me AGAIN to tell me they cancelled the nurse who was going to come this week and they are going to have the previous mentioned complainer nurse come for 3 days this week. I ask what about next week? I HAVE to have someone 5 days/week next week. They say the nurse who has been working 1 day/week will be here Monday and the complainer nurse will be here the next 4 days. I tell them this will have to do but it's not ideal because complainer nurse is not a good fit for our family.

- As I'm talking to the agency, the recruiter puts me on hold and comes back to tell me all plans have changed: our regular nurse just called and talked to another recruiter there and she will be ready to go back to work on Monday!

- So... barring anymore changes (I'm not holding my breath on this one!), we have the complainer nurse the next 3 days this week with no nurse on Friday. Then, our regular nurse will be back on Monday to help my mom care for Caden.

I know I need to trust God on this one. I am more than a little stressed about this because I need a nurse here to help my mom. I know she will do a great job taking care of Caden, but it's the unforseen things that might happen. If he gets sick or the g-tube comes out, etc. Things I can practically do with my eyes closed but my mom hasn't had to deal with.

Thankfully our former nurse case manager who lives close by has agreed to be an emergency contact if my mom needs something. She and I became friends during the year that she helped manage Caden's medical care. Aside from myself, she probably knows Caden's medical history better than anyone. I am so grateful she is willing to help if there is an emergency. And I have to remember that God has taken care of Caden this far and He won't abandon him (or us) now!