UCSF CDH Clinic

On Thursday the 17th of June, we went to UCSF for our 3rd CDH Clinic. Although these appointments stress us out a bit, we look forward to meeting with the wonderful staff at UCSF. They have such a friendly professional crew of folks, and they are always very receptive to our concerns.

The meeting began by "attempting" to get Nayeli's height and weight. They measured her at around 33 inches and her weight was just under 25 lbs. We debated the weight as Nayeli had her clothing on and also was packing a pretty good size pee pee. None the less, we are always pleased by any weight gain.

We then met with the developmental psychologist so she could evaluate Nayeli to see how she is progressing in this area. Nayeli did a great job and even surprised us on a couple of the exercises, which included her pointing out items in a books, stacking blocks, and putting thin sticks into holes in a block. We don't always think this testing is a true representation of Nayeli's, and probably a lot of kids true abilities. Nayeli, like most children who are born with issues, I think get a little shy at the onset as they are not exposed to people and other kids right out of the gate. At home, Nayeli is amazing, to the point of helping us put dishes away, and remembering other complex tasks we do on a daily basis.

Last, we met with Nurse Barb, Dr Miniati, and another Dr who was visting from outside of the US. Prior to meeting with us, they reviewed Nayeli's x-rays we brought from Kaiser. Kaiser now makes us get Nayeli's xrays at a Kaiser facility prior to our UCSF appointment so they do not have to pay UCSF to do the xrays...ah yes, more budget cuts!

Overall, the staff said Nayeli is doing great. We talked about Nayeli's paraesophageal hiatel hernia amd they pretty much said it is the same. We asked them about the possibility of another surgery and they said they would just "monitor it" and watch how Nayeli does with it. Dr Miniati also discovered that Nayeli now has a "belly button hernia." Dr Miniati said that this type of hernia is usually not a problem as long as the hole is "smaller than a thumb." So far, he said they hole is smaller than a thumb and it is another thing they will just keep an eye on. As long as Nayeli eats well and continues to go to the bathroom on a pretty regular basis, they say we have nothing to be concerned about.

We know we are very blessed with our miracle girl. Each day that passes and we watch her grow, we know she is getting stronger every day. The other day, Shane was vacuuming. To keep Nayeli from getting scared of the vacuum, Shane gave her her toy vacuum and had her roll it with him next to the real vacuum. Moments later, Nayeli picked her toy vacuum up with one hand (which is at least several lbs) and walked across the room carrying it with one hand. We thank God for her strength and perseverance every day.

Psalm 29:11 "The LORD gives strength to his people; the LORD blesses his people with peace.

We are so happy that summer is here! We have something fun to do every weekend. Nayeli is loving the outdoors and getting out. We took Nayeli to our dachshund meetup group a couple of weeks ago. We enjoyed a nice walk along the shoreline and enjoyed the beautiful view of SF. I enrolled her in a class through this rehabilation center for wildlife. She loves animals and squeaks when she really likes one.

I decided it was time to get a new pair of running shoes and get out and run. I was afraid of running before because my Doctor told me that by running it could reduce my milk production. Nayeli will be 20 months and she is still BF. I don't think my milk supply will be a problem. I ran 1 mile the first week and 1 1/2 the second week. It's so much harder when you have to push a baby in the stroller with Molly on the bottom basket and also have Twinkie on the leash. I am going to continue running at least once then twice then three times a week. I love running! I just wish I could run like I used to.Nayeli loves pushing the stroller with Molly and Twinkie. Molly enjoying her new carseatIt's funny to see Nayeli go in to the laundry basket and read her books.

Fun in So Cal

I can't believe how long it's been since we updated the blog. We have been having so much fun! We recently took a trip to LA. We visited lots of friends and we went to Disneyland. Nayeli loved it! The weather was so nice 80 and 90's the entire time we were there. I loved it! Shane doesn't do well in heat. We had a nice relaxed time. My parents cooked the entire time we were there so I felt like I was at a five star hotel with them. They really make us feel special. My parents took us to a nice four year anniversary dinner. It was great going out and going to a restaurant. I loved having her sleep in the same room with us. She would wake up and start talking. She is in such a good mood in the morning. My dad got this shirt for Nayeli when he was in Oaxaca earlier this year.
First time on a playground swing. Going out with friends.First time on a pony.Having fun with CDH sister CadenneSparky and Molly salivating over my mom's BBQ. All three cousins together.
Our Family!
Going out with friends!
A week before our vacation Shane sprained his ankle while he was playing hockey. He is recovering. I think Nayeli knows daddy doesn't feel well and gives him a harder time. She refuses to be carried by him alot and wants me to carry her or hold her. We thought we were past this. She screams and cries everytime Shane puts her in the carseat. I don't have that problem unless we are leaving a fun place. Nayeli is starting to be more vocal about what she wants. She started this habit to ask for her binkie before bedtime. She would only use the binkie during the day for naps. Now it's the first thing she asks when she is going to bed. I have given it to her but take it away as soon as she falls asleep. It actually helps her go to sleep faster. I guess the binkie is a good thing.

Her voice is so cute when she wants something. She will say juice yes, milk no, cheese yes. When she refuses to eat she will eat chips or crackers. We are ok with that as long as it's loaded with calories. I am breastfeeding three times a day. I probably average 2oz. each time. I will cotinue to BF as long as she wants. I was starting to worry when I was only pumping a couple of drops during the day at work. I am not pumping as much but will average 2oz a day. She seems to take more when she breast feeds.

We are enjoying taking her to the park and having her do regular things. We are still cautious and wipe her hands after. We are also enjoying going out to dinner. We hope we can be normal one day.

She started saying animal names and what they say. She says sheep baaaa, cow moo, horse ney, and will only make pig and lion sounds.
She is starting to say two words
*bless you after we sneeze
*thank you
*poopoo ewww yuckie
She says that each time she sees the dogs pooping or she goes outside our backyard and points to it and says that.
She mimics us alot.
Her new words are grandpa, grandma, box, fart, please, open, on.

She loves the light switches and likes to open and close anything she can get to. We are child proofing all of our drawers, cabinets and door handles. She started to unzipper her pj's in the morning.

Her favorite dance CD is Michael Jackson. As soon as she hears it she starts dancing. We are allowing her to watch 30 to 45 minutes of TV. She loves Yo Gabba Gabba.

I love when she blows goodnight kisses to me. Her favorite book is the Baby Bible. She especially likes the pictures of the animals on Noah's ark. She will try to say their name and make the sound or mimic how they move. For Giraffe she extends her head out. For elephant she will take her arm out and wave it. Her favorite one is the Lion she will roar. Everything she does is miracle in our eyes. We hope to start potty training soon. We are shopping around for a good toilet for her and a travel one too. She has always done things on her time so we will be ready for her when she tells us she ready for potty training.