American Heart Association Start! Heart Walk

Thursday, September 16 was the State workers heart walk. Andrea, the MLH coordinator, and I went down to the state capital building and set up a booth for Mended Little Hearts. We shared pictures and stories of the children in our group and how incredible they are. We met people who had children with congenital heart defects, or knew someone who did, and were able to do some networking. It was a good day and I am glad we were there. These first 4 pictures are from the state workers walk.






On Saturday, September 18, was the main heart walk for everyone. I've been planning on doing this walk for the last year but only started fundraising for it about 2-3 months ago. Mended Little Hearts had a large group of people walking. And, within MLH, we had several team captains with our own teams. For example, our team had 17 people walking that day. My team has raised over $1500 and there are still donations coming in. If you would like to donate, you can still do so! Just contact me and I can let you know how. As a whole, MLH raised over $9000 which is so awesome! Every dollar raised by any of the teams under Mended Little Hearts goes directly to pediatric CHD research. Research like this will help children like Kyler & Caden.

We were joined by some awesome friends and family for the walk. We were planning on having Kyler and Caden both there with us for the walk but unfortunately Caden got really sick that week prior to the walk. He was having fevers as high as 104.6! Greg's mom drove down from Oregon and was planning to do the walk with us. However, since Caden was sick, she graciously offered to stay at home with him so Greg & I could still take Kyler and walk with the rest of our team.

Thank you to the following people who joined me, Greg & Kyler: Natalie, Gail, Heather, Collie, Dick, Joan, JB, Sharon, Lexy, Vanessa, Will, Shirley, Malia, Dimple.

We plan on making this an annual event for our family so if you missed it this year and would like to join us next year, please let me know and I will keep you posted when the time gets closer. :) The walk takes place in William Land Park in Sacramento; a gorgeous place for a 5k walk!


The location for the heart walk

L-R: Malia, Sharon, Lexy, Vanessa, Shirley


I love their tattoos!

Wonderful surgeon, Dr. Teimour Nasirov with me, Greg & Kyler

Pretty much everyone in red in this picture is on our team. Teimour was walking with us for awhile also. :)

Greg & Kyler walking

Our incredible team, we are so thankful to all of you for joining us!
Clockwise starting in back row: Will, Shirley, Heather, Gail, Sharon, Lexy, Kyler, Greg, Carey, Natalie, Dimple, Vanessa, JB, Collie, Malia (Missing: Dick & Joan)

At the finish line!

Shirley, Will & Malia - thanks for joining us!

Sharon, JB, Vanessa & Lexy - you are awesome!

Lexy sporting her new MLH tattoo on her cheek :)

Kyler loving the strawberries offered at one of the booths after the walk

Vanessa & Malia relaxing after the walk

Greg's sister Natalie drove over from Walnut Creek to walk with us

Greg, me and Will all enjoying our mint chocolate chip ice cream cones :0

At home after the walk, we had to have a family photo in our MLH t-shirts since Caden couldn't be at the walk with us

Fundraising

On Monday, September 13, our heart support group, Mended Little Hearts of Sacramento, held a fundraiser at Chevy's on the River in Sacramento. It was a fun thing to do in place of our regular monthly meeting. Our family went and some good friends of ours joined us for dinner. Overall,there was a good turnout of people supporting MLH. I haven't heard the final result in the amount of money raised. But it's a start. We are trying to build up some reserves so we can purchase supplies for care packages for families with children in the hospital, etc. If you would like to make a donation or find out how you can help, please send an email to: SacramentoCA@mendedlittlehearts.org.

Caden having a good time with our good friend Shirley!

Kyler with Shirley & Will's daughter Malia

1st Day of Preschool

Today was Kyler's 1st day of preschool or pre-K, however you want to call it. It has been a LOOOOONNNNNGGGGGG summer and I was literally counting down the hours until school started this morning!

I prepped Kyler the day/night before about what would be happening. We laid his clothes out and got ready to go. I copied another friend's idea and got a little mini chalk board for Kyler to hold, showing the event and the date. (Thanks Jen!)

Greg and I took pictures with him and then after he finished breakfast, we were off to school. I told Kyler he would see many of the same friends from last year and there would also be some new ones. There is one new teacher this year that he didn't have last year so I told him her name. Being in the 4's class is going to be different than the 3's so I wanted him to realize that before he got there.

He was excited to be there and back in the familiar classroom. I stayed for a few minutes as he got settled in but he certainly wasn't sad to see me leave. He's very independent! When I arrived to pick him up, he came without a fight but told me he really didn't want to leave. I am so happy he is able to be there at this great school. What a blessing! I am looking forward to this school year. I know he will do well and thrive there.

On Monday, Wednesday and Friday he's there from 9-Noon. The great thing about that for him is that he doesn't have to come to some of Caden's therapy appointments anymore as I have a couple of them scheduled while Kyler is in school. That will be nice for him. All in all, I am really excited about this school year!

Bike Ride

On Sunday, we took Kyler to the park so Greg could start teaching him how to ride a bike with two wheels. We have not done any training wheels with him because we want him to learn his balance. Up until this point, he has just ridden his “Big Wheels” which has three wheels. So this was a big change for him. He was a little nervous about it but he did great!

I am so proud of the way he kept getting back on his bike whenever he fell, and he fell a lot. All we ask is for him to try his best and he did. He worked so hard and had such a great attitude about it. He needs to continue building his confidence because he thinks he's going to fall, so he just stops peddling and then he loses his balance and falls. But when he keeps peddling, he does a great job. I think it's a matter of time before he really gets the hang of it. I'm really proud of him for doing this well so soon.

Little Man Haircut

I know I recently posted about Caden's 1st haircut and posted some pictures. However, I finally took the plunge and allowed Greg to give Caden a real haircut with the clippers and cut off all his long hair. I was really nervous about it because I didn't know how he would respond to the sound of the buzzing clippers. But he did really well. I did have to help hold his head still a few times, but overall, he did awesome!

What do you think of his new look? I think he looks all grown up and is quite the little man now. My baby is gone. :( Bittersweet moment.

New Nurse

God definitely has answered our prayers. Our new nurse started last Thursday. We had two days of overlap/training with our old nurse on Thursday and Friday. Yesterday was the new nurse's first full day on her own. I have to say I was more than apprehensive about getting a new nurse. We really liked Caden's old nurse and were sad to say goodbye to her. We have had a few temporary nurses during the last few months and all of them were horrible!

But I asked for prayer on this matter and God answered. I got a call from the nursing agency last Wednesday telling me they had a nurse lined up to start orientation on Thursday. When I asked them to tell me more about her, they said she was Russian and that was her first language but that she did speak English also. They told me she had been filling in for another family with a 5-year-old boy whose nurse had been out of the country for several weeks. That scenario sounded familiar as it sounded like the family of our former nurse case manager who is now a friend of mine.

I called her and asked her the name of the nurse who had been filling in for her older son and what did they think of her. She told me her name, which was indeed the same person, and said they loved her! She told me she couldn't think of anything negative to say about this nurse. She said she was very unobtrusive, soft-spoken, and loving with her child. I was so relieved to hear this report.

So when I met her on Thursday I was happy already. She spent most of the day doing orientation with our old nurse. I was so glad to be able to have the overlap so the old nurse could tell her all about Caden and his unique issues as well as about our family and how we like to have things done. One of the things I liked best about our old nurse was how much she truly loved Caden and Kyler. She was good with both of them, and when Caden was napping, she would often play with or read to Kyler. So nice!

I truly believe God's hand was in this process in getting us our new nurse. Having the new nurse work for friends of ours before coming to us allowed us to find out a little more about her and know with confidence that she was a loving, caring person. Things have been great so far. She cares well for Caden and he has taken to her very quickly which is unusual since he is so scared of anyone new. I think that's a good sign because he's comfortable with her. And, the nurse happily plays with Kyler when Caden is napping. All in all I am very happy. She tells me throughout the day if there is anything we want her to change, just let her know and she will do it right away. Thank you for your prayers. God is so good! All the time!

Baby Treadmill

Huh? What is that? Well, I'll tell you. We now have a baby treadmill in our house (for the next 6 weeks) because Caden is participating in a physical therapy research study. The researcher is a physical therapist and a professor at University of the Pacific. As with any study, there are certain requirements that have to be met and Caden meets those. The treadmill is designed to see if they can help children with neuromotor delays (such as CP) learn how to walk.

Lately Caden has been getting much stronger and has been pulling up on everything. Not just in his crib anymore. He pulls up on the couch, chairs, refrigerator and sliding glass doors. He is also doing some cruising as well but is not proficient at it yet. His regular PT says he is probably getting close to walking which is amazing. It's been a long journey with his gross motor skills. But the fact that he is crawling more and more is very good. Honestly, having him crawl for a long time is very good for him developmentally as it helps the brain coordinate both sides of the body and helps the limbs learn to move independently. But it seems like he is really interested in walking now so we are doing everything we can to get him ready for that.

With the treadmill study, we have to put him on it for between 5-20 minutes twice/day, six days/week for six weeks. It is supposed to help him learn to walk automatically without really thinking about what he is doing. This first week we had it, we were just getting him used to it and used to the routine. We were not tracking him yet. But we had to get him familiar with it so when we did start he was ready to go. Last Saturday in his first practice session he seemed interested and excited about it so I was glad about that.

I started slow and just put him on the treadmill a little at a time. The first day, he only lasted about 30 seconds on it before he fatigued. The next day he did three or four minutes. Then he started consistently doing between five and 10 minutes each session. It was truly amazing to see how much progress he was making before we even started the study. His stamina has improved so much in such a short time.

The researcher came this morning to get us officially started. We now log each session with the numbers on the “counter” on the treadmill. This tracks the time it is running. I was so excited to start the study and I told the researcher how much Caden loved the treadmill. He really does! He is so proud of himself and he just keeps taking steps. I have to say, I think it is probably one of the cutest things I have ever seen in my life!

Keep in mind that before using the treadmill, Caden did not walk at all. He never even considered it. In his session this morning, he walked for almost 20 minutes! Pretty unbelievable considering that less than a week ago, he couldn't even last for 30 seconds. I am so excited to see how this helps him progress over the next six weeks. I'll keep you all posted and will post more pictures and video later. In the meantime, enjoy this little video I put together from the other night before the study actually started. :)