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.

Status 2

We had another huge answer to prayer yesterday. Caden's case was reviewed at Alta California Regional Center to see if he qualified to be deemed a “status 2.” We already went through this once before at the beginning of November and he was deemed NOT eligible so we were really discouraged. But after receiving a diagnosis of CP from the neurologist, our service coordinator presented his case again and they decided he DOES qualify now.

Originally we were told he needed to have a 50% delay in three or more areas which he did. He had delays of more than 50% in gross motor, speech, and self-help. However, when they originally discussed his case, they said he didn't qualify because he needed to have a diagnosis of either mental retardation, epilepsy, autism or cerebral palsy in addition to the delays. So, we got the CP diagnosis and waited to find out the results of the second meeting. Thankfully they decided he was eligible.

So, most of you are probably wondering what this actually means. Well, first of all, it means that he qualifies for MediCal as a secondary insurance right now. This is a huge relief for us because it means that if/when Caden reaches his lifetime maximum with his primary insurance, we have a backup. That is a big deal when you are considering the health issues Caden has to deal with and the long term effects of them.

In addition to the MediCal waiver, it also provides us with respite/nursing care for Caden. Currently what they requested for us is 90 hours/quarter. We are going to start with that and it should be available to us as early as next week. Yippee! However, our nurse case manager would really like to see us get a full-time nurse (40 hours/week!) in our home to help care for Caden. That takes much longer and we have to wait for the MediCal to go through which can take some time. But in the meantime, I am grateful for any help with Caden because it means it will make life much easier for us especially during these winter months while we keep him isolated.

Kyler and I have already started to go a little stir-crazy and it's only December. We still have approximately four more months left of isolation for Caden. But with respite care, someone can be at the house with Caden while Kyler and I can have a playdate with friends, or even just go to the grocery store, etc. It will be so wonderful to have that! It is just one more way for us to keep Caden healthy this season.

So, we are grateful right now for where things are at. Nothing about this process has been as easy as it could have been and I have had to fight for everything! But I am willing to do whatever it takes in order to get Caden the help that he needs to thrive. That is no small task, but I'm his Mommy and that's my job! Thank you all for your continued prayers. God is good, all the time. And, I know that without Him, we wouldn't be where we are at right now.

11 Months Old

I cannot believe that on December 9, Caden turned 11 months old! I am still in shock! I can't believe that in less than one month, he will be 1 year old! Because of all the challenges Caden has and the delays in his development, I think that adds to my feeling that he is still a small baby, and not on the verge of toddler-hood. Of course, that is true, he is a long way from walking, and probably even crawling. But even in just thinking about the amount of time that has gone by, it's amazing.

On one hand it feels like an eternity since he was born. After all, most people don't have to go through all that Caden has in their entire lives, let alone in the first year. But it also feels like he was just born yesterday. I love our sweet baby boy and am so glad to be his mommy. I am blessed to have him in my life!

Christmas Tree

On Sunday, December 6, we took our little family and went to pick out a Christmas Tree. For most of you, that might not seem like a big deal, but for us it was! Last year, we were living in the Ronald McDonald House over Christmas waiting for Caden's arrival and we didn't get to enjoy doing any of our normal Christmas things. In addition, I was on bed rest, so we were even more limited as to what we could do to celebrate.

This year it was so much fun to bundle the kids up with their warm hats and go pick out a tree. I wish we could have gone up into the foothills and cut down our own tree, but that was not to be the case for us this year. We just went to a little lot right off a busy street near our house. The location wasn't ideal, but at least we got to enjoy our time together. Kyler had fun running through the rows of trees and quickly settled on the one we brought home. We asked him about a couple other ones, but he wouldn't budge.

We brought it home and it is now sitting in our living room. We had fun with Kyler putting the lights on and hanging all the ornaments. This was something we didn't get to do last year and it made it all the more special this year. Kyler thought it was very fun to hang things on the tree and loved to see the picture ornaments of himself. So cute! Caden sat and watched everything we did with great interest.

I am feeling very blessed this holiday season as I reflect on last year and what we had going on then. A year ago, on December 16, Greg and I moved to the Ronald McDonald House at Stanford. Because I was on bed rest and because we didn't know when I would go into labor, we couldn't have Kyler stay with us. So between my mom and Greg's sister, he was taken care of. But it's not the same as having your whole family together.

There were so many uncertainties last Christmas as we didn't know what to expect when Caden was born. We didn't know if he would be able to breathe on his own, we didn't know how soon he would have surgery, and we didn't know how long he would have to remain in the hospital.

And, now this holiday season, we have Caden at home and overall he is doing amazingly well considering everything he has been through! We are so proud of our little fighter and all he has overcome so far. We know he has a long road ahead of him but given what he has accomplished already, we know he will persevere!

Enough of my sentimentalities... I hope you enjoy the pictures of our Christmas tree outing. :)

Hearts of Hope Holiday Party

On Saturday night, December 5, we attended the Hearts of Hope holiday party. It was held at Sutter Memorial Hospital and was so much fun. So many people did so much work to make it a fun, special night for the kids. There was great food and fun crafts for the kids. And there was even a visit from Santa with gifts for every child, heart children and siblings, thanks to the generosity of one person in particular!

We love our heart support group and are so grateful for everyone involved. We ended up leaving a little early because both the boys were tired. But we are so glad we got to go. It is Caden's one outing other than to doctor or therapy appointments. Otherwise he remains in isolation at home in order to keep him healthy!

Neurology Appointment

On Wednesday, November 25, I took Caden to see a top pediatric neurologist in Sacramento, on the recommendation of our nurse case manager and a few other people. Like I have mentioned before, we are trying to get Caden classified as a “status 2” at the Regional Center. Initially we were told that he would qualify if he was evaluated with delays of 50% or more in three or more areas. He met that requirement with delays in gross motor skills, self-help, and speech. However, when his case was presented, they denied him because they said he needed to have a diagnosis of either mental retardation, autism, epilepsy, or cerebral palsy.

His nurse case manager said she thought there had to be something more going on with him because of all of his developmental delays. The Regional Center was pushing me to take him to see their developmental specialist doctor but I was hesitant to do that. I felt that he was working on behalf of the Regional Center and would not be an advocate for Caden. So I didn't want to do that. I had already scheduled an appointment with Dr. Asaikar and I was planning on seeing him about Caden's issues.

I took in a stack of medical records for him to review and I also gave him a thorough verbal medical history. He asked me what my medical background was and I told him I didn't have one except for my experience with Caden. He told me I gave him a medical history as well as a 2nd year medical student. I took that as a compliment.

Anyway, after reviewing everything with me and observing and examining Caden, he said he was going to give him a diagnosis of mild cerebral palsy (CP). He believes that it is directly related to Caden's cardiac arrest and resuscitation that probably resulted in lack of oxygen to his brain. But they saved his life and we are grateful for that! Dr. Asaikar said he saw a lot of really good things in Caden. He said he was doing a lot of things right. But he also acknowledged that there were a significant amount of areas of concern. His development is all over the place. In some areas he is a couple months delayed, in others he is six or more months delayed. But he is not the "classic" case of CP that most people think of so most people would never even think he had it.

The major factors for his reason of diagnosing him with CP are the presence of some neonatal reflexes which should have been integrated and not present anymore, and the absence of reflexes which should have developed by now and haven't. He also said part of the reason for the diagnosis is to ensure he gets the necessary treatment and therapies. In his words, it is part of playing “the game.” We are hoping that this diagnosis will qualify Caden for the status 2 because that would provide us with nursing or respite care. This would help us ensure Caden's health during the winter months especially. And, it would also get him on Medi-Cal as a secondary insurance. We do not qualify for it currently because of income. However, Caden is halfway to his lifetime maximum with insurance so it would be nice to have a backup for him.

And one of the most awesome things about the appointment is when the neurologist said he was here as an advocate for Caden. He was willing to go to bat for him in order to get the things that he needed. He specifically said he wants Caden to receive PT twice a week, OT once a week, speech once a week and feeding therapy once a week. So now I need to follow up with our service coordinator at the Regional Center and see if we can get PT approved for twice a week and get speech therapy going. They are really not going to like that, but Dr. Asaikar said they typically didn't like him because he didn't let them get away with short-changing his patients. I am so excited to have him on my side and fighting for Caden!

One of the things we've decided is that we are not going to tell Caden about his diagnosis. I don't want him thinking of himself as different from everybody else. He will already know to some degree, of course. But I don't want him to grow up with that “stigma” I guess. As he gets older he will discover it on his own, especially as he starts to understand more about the reason for all his therapy appointments and doctor's appointments. But in the meantime, I hope those of you reading our blog will also respect our desires and not talk to Caden about it, or Kyler for that matter. Kyler doesn't need to know the diagnosis either. We want Caden to have as normal of a life as possible.

Thank you for your prayers. I know God continues to put good people/doctors/therapists in our lives to help us at just the right time.