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.