Wednesday, November 26, 2008

What are you thankful for?

Here are a few things I am thankful for this Thanksgiving:

-An amazing little girl who makes my heart smile!

-My supportive husband who is a great father.

-Wonderful Family and Friends. This year has not always been easy on us, but we’ve had more support than we could ever have imagined.

-All the nurses, doctors, and other staff who have helped us along our journey over the last year and continue to help us today and in the future.

-All of you who have become another extended family. I love reading your stories, and hearing your comments about ours!

I hope you all have a great Thanksgiving!

Monday, November 24, 2008

More Feeding Help

We love our primary care doctor! He listened to our concerns about Olivia’s feeding issues and took them seriously! Thank you! He agreed with me that it is a concern and we should be working on trying to get her eating and not relying so much on her g-tube. Although neither he nor I wanted to start her on another medication, we decided that it would be good to try a medication to get her intestinal tract moving. We started this medication on Friday. She did actually act hungry a few times yesterday and today. It seems to be helping (knock on wood!).

This weekend Olivia and I stayed at my parents’ house while Joe was up north hunting. While we were there we went and had photos done with Olivia and my two nieces. It was kind of a fiasco, but really cute.

This is my mom with her three granddaughters!

Thursday, November 20, 2008

Our First LPA Event

We attended our first LPA event on Sunday! It was really fun and great to talk with other adults and kids with dwarfism. There weren’t as many people there as we had expected, but that may have been for the better. We were able to talk to almost everyone. We met some really great people, and had some really great conversations. Maybe most importantly we saw our friend Connie and met some of her family. Connie works in the NICU at St. Mary’s, where Olivia spent her first four months of life. I think Olivia remembered Connie too. She smiled a lot for her and was totally comfortable when Connie held her! I didn’t get many pictures that day, but here's a couple.

Olivia with Connie. She loves touching faces these days!

Just a quick family shot!

Saturday, November 15, 2008

Feeding Update

So I can’t say we really got any news yesterday. The swallow study and upper GI went OK. Olivia wasn’t a huge fan of the barium, but we were able to get a few swallows in her to see that she can swallow fine. They then put some of the barium directly into her G-tube to watch it travel through her stomach to her intestines. She puked it up a couple of times, but other than that it looked fine. The doctor said there was nothing to be worried about at this point. From there the speech therapist said that we just shouldn’t push the bottle. If she doesn’t want it just tube feed her so that bottle-feeding doesn’t become a bad experience for her. She also said that if she likes eating the baby foods to continue introducing those and let her eat as much of those as she wants. I had already set-up an appointment to see the feeding clinic at the Waisman Centerin December. That is where Dr. Pauli works also. This would be a team of people including a pediatrician, speech therapist, nutritionist, and possibly some others. I plan to keep this appointment because I would like to get some more opinions.

We also saw Olivia’s Pulmonologist. That appointment wasn’t bad, it just didn’t go as well as I had expected. I thought he would be really impressed with her breathing, and we would be able to turn her oxygen down more. Her breathing sounded good, and her saturations were good all the way down to 0.1 again, but we weren’t able to turn down her oxygen. He was concerned because her weight gain was not as much as they would like to see. Let me just vent about that!! There are several nutritionists who are supposed to be working with us, but they all just assumed that the others were. We didn’t know this so we haven’t had a nutritionist working with us. We’ve had to be just guessing at how we should be increasing feedings, but then Olivia started spitting up more again. It took about 5 calls to the GI doctor to get any answers as to what we should do with her feedings! So…If we had been given the guidance we were supposed to be, she probably would have gained the weight! UGH!

Anyway, it ended up being a really long day for all of us! We were at the hospital for about 4 hours, which seemed like about 10! In addition to the swallow study and upper GI, Olivia had to get a flu shot and RSV shot. Poor Kiddo! She handled it like a champ though, and then slept until 9:30 this morning! Which Joe and I greatly appreciated!

Have a great weekend everyone! Tomorrow we will be going to our first LPA event! I am super excited!

Thursday, November 13, 2008

Feeding Help

Good news! This morning I received a phone call from Lori, the speech and feeding therapist who Olivia saw when she was in the PICU at UW. She saw the request from Dr. Erickson, Olivia’s GI doctor, to do the swallow study and upper GI study, and that it wasn’t scheduled until Dec. 10. She called because she had the availability to do it tomorrow, and thought it would be good to get it done sooner. So…Olivia has an appointment at 1 to have the swallow study done. They will feed her barium with her sitting next to a live x-ray machine. They can then watch her swallow the barium and watch it travel down her esophagus, through her stomach and though her intestines. This will tell them if there are any underlying medical issues that would be causing her to not want to eat. The speech therapist will be watching the whole thing too. This will be good because Lori saw her eating when she was eating the very best, so she will be able to tell if there are differences in her eating now.

Olivia will also see Dr. Green, her pulmonologist tomorrow. That appointment is at 1:30, but luckily in the same place as the swallow study. Olivia will get her flu shot booster and her first RSV shot. It would be nice if we could turn her oxygen down a little too!

Because the appointments are so close together we will have the swallow study done, go to the appointment with Dr. Green and then go back to talk about the swallow study with Lori. Hopefully we’ll get some good suggestions that will help get Olivia’s feeding back on track! I will update sometime this weekend on how the appointments go.

Friday, November 7, 2008

9 Months Old!

WOW, Can you believe Olivia is 9 MONTHS already?! It sure has been 9 months of ups and downs, but worth every second!

I already posted about Olivia’s 9-month check-up, but we saw her Geneticist, Dr. Pauli, on Wednesday. The appointment went really well. Dr. Pauli was really impressed with how well Olivia is doing. He said he didn’t really have any concerns about her at this time. We’ll see him again in about 4 months.

We are working on pursuing a feeding team consult for Olivia. None of Olivia’s doctors have suggested such a thing. It’s frustrating to me that none of them seem to be concerned that most days Olivia takes 25% or less of her total feedings orally. By this point I would think that would be a bit concerning. I am pushing for further investigation of this because I know that Olivia CAN do it. The question is why isn’t she? Hopefully we’ll get some answers!!

We also got Olivia’s 9 month pictures taken and some family photos as well. Here are some of the rough copies, without cropping or retouching.

Saturday, November 1, 2008

Halloween Fun!

Hope everyone had a great Halloween! Here are some pictures from ours:

We played in the leaves during the day with my niece Cora!

My niece Ella handed out candy from her rocking chair. She enjoyed a little while she worked!

This gives a whole new meaning to "Cute as a Bug"