Olivia's 1st Christmas!

We hope everyone had a wonderful Christmas! Our first Christmas with Olivia was a busy one, but a really great one! We spent Christmas Eve at my grandparents’ house, Christmas day at my parents’ house, and had a final Christmas celebration yesterday. Olivia got completely spoiled, but she loves all the gifts she got! Olivia wasn’t entirely sure what to do with the gifts, but she did like to pull on and eat the paper.

On the medical side of things, Olivia had another disappointing appointment on the Friday before Christmas. We are trying to get an appointment for a second opinion. The GI doctor we see thought we should just put Olivia on a continuous feed from a pump all day through a tube that bypasses her stomach and goes directly into her intestines. We just don’t see how that will help. She also told us that there was no way her medications were causing her vomiting problems. We thought otherwise, as did Olivia’s primary doctor. I have since had her blood pressure medication changed. She was getting 10 ml three times daily of the med she was on. That’s an ounce a day! They switched her to a different med, and she only gets 2ml twice a day. So far, since the switch, no vomiting! (Knock on wood!!!)

Enjoy a few photos from our Christmas celebrations!

Disappointing Appointments

Olivia had a busy couple of days with appointments both yesterday and today. Yesterday we saw the Nephrologist. That appointment was rather disappointing. It began with me goofing on the appointment time. I thought the appointment was at 10:00 but it wasn’t until 10:40. At 10:30 I asked if the renal clinic was running behind, which is when they told me that Olivia’s appointment wasn’t until 10:40. I asked again later, probably around 10:50, and was told that they still had to take the 10:00 appointment back. They finally took us back for check-in at 11:00, but then back to the waiting room we went. At about 11:45 they took us to an exam room, where we waited until after 12:30 to see the doctor. The doctor then was slightly unpleasant to deal with. Olivia’s geneticist said that we need to be checking her blood pressure on her leg, because her upper arm is just too small, but the nephrologist strongly disagrees with that. She acted angry with me because the geneticist hadn’t talked to her about that. She huffed at me several times telling me she “just didn’t know what to even do with these blood pressures”, referring to the readings we’ve taken at home. By that point I was seriously aggravated and told her that this was really frustrating to me that we are being told different things by different doctors and then have to make the decision of which advice to follow. We then end up looking like the bad guys with whichever doctor’s advice we don’t follow. I told her that I wished we could have a meeting with all of Olivia’s doctors at the same time, and get some of these issues resolved! After that, she was much nicer to me and said she would look into whether there were norms for taking blood pressures on the legs for kids with achondroplasia. We have to go back for a follow-up and another renal ultrasound in June, and next week for a follow-up echocardiogram.

Today Olivia saw the pulmonologist. She was less than pleased with being back at the doctor’s office again. I had hopes of turning her oxygen down, but no such luck. Her oxygen levels were not very good. On the plus side, her numbers were good enough that we didn’t have to increase the oxygen. While there I also met with the nutritionist that works with the pulmonary team. She is awesome, and we talked for a long time about Olivia’s feeding and vomiting issues. She then talked to GI who is going to get back to me on Monday about possibly doing a pH probe study. That is where they stick a probe, about the size of the feeding tube that she used to have in her nose, up her nose and down her esophagus. It will help them to determine the severity of her reflux. This is such a concern because while she was taking almost 60% orally per day when she came home in June, she now averages about 5% orally per day. She is also vomiting, not spitting up, but vomiting. She dry heaves and turns red in the face and then projectile vomits several times each day, which is hindering her weight gain. We might not be able to solve her issues by doing the pH probe study, but it will at the very least be one more thing to rule out.

Next week Olivia will see our primary care doctor, the GI doctor, and also have the follow-up echo that I mentioned above. She’s one busy little girl these days!

ENT Appointment

Hello All! Sorry it’s been so long since the last update! Olivia is 10 months old today!!! Can you believe it? Where has the time gone?

Olivia saw the Ear, Nose and Throat Doctor on Thursday. The speech therapist and GI doctors decided after her swallow study went well that we should see an ENT to be sure there were no structural concerns that could be interfering with her eating. The appointment went well. They put a fiber optic camera up her nose and down her throat. It only took 2 minutes 17 seconds, but seemed like 10. She screamed through the whole thing! I probably would have too. They said that structurally everything looks good. The doctor and speech therapist we saw even seemed to have a good knowledge about achondroplasia! The doctor wants to see us again in a few months just to follow up since kids with achondroplasia are predisposed to ear problems.

While we were at the hospital, we also saw the GI nurse practitioner. She walked me through changing Olivia’s tube. Boy am I glad I didn’t try that one at home alone!!! I did it though and hopefully each time it will get a little easier. Thankfully, Marcy said that we can continue to bring Olivia there to change it until we are comfortable.

Olivia has a follow up appointment with the renal clinic this week. They will check up on her blood pressure and probably do some lab work. She also has an appointment to get her next RSV shot and see the pulmonologist. Her weight gain has been good this month so keep your fingers crossed that we can bring the oxygen down a little more!

We are continuing to work on the feeding issues. Some days look like we’re making huge improvements, and others, well, not so much. We will just keep plugging along and we’ll get there someday!

Meanwhile, we are getting ready for Christmas in the Kiefer house. We have our tree up and decorated. We get our tree from up north where Joe is from every year. Actually we buy it from Joe’s kindergarten teacher. Most of our gifts are bought, wrapped and under the tree. I am so excited for Christmas this year.

Enjoy a couple of random photos!

"What? I didn't do anything!"
(Notice her oxygen cannula hanging there) Olivia's new trick is pulling her cannula right out of the sticky circles that hold it in place.

Sleeping in her car seat. How cute is this new hat?!

Sitting in the chair like a big girl!

Looking cool in her hat and shades!