Sorry the delay in posting

Sorry to leave you all hanging. We took Arianna to the peds on Friday and thankfully she did not have a bladder infection but they are running a culture to be sure. They were suppose to call us today but never got a call. It sucks when your pediatrician only works 1 day a week and the office staff is always changing.

Arianna is doing great. No coughing, high sats and eating fairly well. She drank more milk today than I've seen in a long time. I guess she is just making up for the past week of poor eating.

I had a wonderful Mother's Day with family. We went to my moms for a few hours then over to see Robert's family. Arianna fell asleep in the car on the way home. Of course I forgot my camera so I have no pictures to share.

I'm actually in the process of getting my office set up to work on some scrapbooking so I'm sure I'll share some old photos soon.

Tomorrow we see Sherri (early interventionist) and Janet (occupation therapist). I'm sure Arianna will love the company all afternoon.

Quick update

We took Arianna in today and the pediatrician says she has croup. There is nothing we can do but wait it out and give oxyen as needed. She will definintly be sleeping with us until this is over cause her airway can get worse during the night. We're not sure if we will be able to keep our plans of going to Robert's family house for super bowl.....we'll just have to wait and see.

I did have a chance to snap a few pictures of Arianna wither her wonderful pediatrician, Dr. Kurtzman!

Arianna always plays with her necklaces

She looks really upset in this picture but she was actually giving her dorky little smile she always gives. Too bad it doesn't portray well in this photo.

Talked to pediatrician

I spoke with the pediatrician today and these are her exactly words, "Arianna will always be a mystery." She honestly said she is not completely familiar with Arianna's cardiac structure but feels reassured that the cardiologist didn't do anything when I told him about her eyes at our appointment back in August. Arianna's eye were better today so I wasn't as concerned but I wanted to talk to the pedi anyways. A few of you asked if Arianna is on any medication and she is not. The doctor said to call if she is having a decreased urine output or the eyes get worse.

Yesterday we visited with our occupational therapist and one thing I asked her was if Arianna would benefit from a medication called Periactin. This medication is used sometimes to help stimulate a person's appetite. The OT thought it might be beneficial but wanted me to talk with the pediatrician. So I asked her about this today and she felt it wasn't something Arianna needed. Arianna is not underweight, just on the smaller side. She doesn't eat well but she does eat when she wants. I'm perfectly fine with that because I've heard this medication can have cardiac side effects and I really didn't' want to worry about that.

So.....we don't see the pediatrician till December for Arianna's well-child checkup. :)

Good report

Dancing around the living room...

Kathy, I decided this will be her halloween costume!

Cheese!


Mom, do you need any help?

(This kid LOVES playing with the dishwasher)

This is the face she does every time I say cheese..

So the doctor checked her lungs, ears, and throat and everything looked good. Thank God!!! At first she thought there was some decreased sounds in her right lung, she said it's really hard to hear over her murmur, but after 4 attempts everything sounded good. I've been wanting to buy a stethescope for some time and I'm sure some of you heart moms already have one, so do you have a preference? I figured I'll look on Ebay and see what they got.

The doctor felt that Arianna is just dealing with a normal virus and because of her lung disease we need to monitor her sats throughout the day. If she drops below 87 while she sleeping, or 90 while awake, then we are to put the give her some oxygen.

Get this...we are in the parkin lot of the doctors office and Arianna was falling asleep so I checked her sats and she was 92%. We get in the doctors office, they check her her sats and she's pulling 97%. Doesn't that always happen....your child is sick until the second they step into the doctors office. She did do a little cough when the doctor walked in the room so at least they know I'm not a crazy mom...wait...they already know I'm a crazy mom. :)

Our pediatrician is so great, the second she walked in the room she handed me Arianna's last two reports in her chart. She knows how organized I am with her medical records and always gives me copies. Seriously...I love this woman!

Right now we are waiting for Robert to get back with gas for the grill and we are going to grill up some hamburgers. YUMMY!

Appointment with the pediatrician

Today was Arianna's 18 month well-child check up with the pediatrician. It's almost funny calling it a well-child appointment. The pediatrician came into the room and looked at me and asked, "How are you doing?" I thought about it for a second and responded.... "Tired."I am finding myself so emotionally tired lately. Alot of it comes from taking care of child that has a disability but there are other areas of my life that I'm struggling with right now. I wish I could be that perfect girlfriend, mother, friend, etc....but I can't. So when the doctor looked at me and heard my answer she did something that really brightened my day. She said, "Okay...well Arianna is here for a well-child appointment so lets talk about all the normal stuff first." I can't tell you how great that felt. For just a brief moment I got to see what it would be like if I had a normal healthy child. Of course I laughed my way through the questions cause I could of added so much more, which would get into all the medical issues, but instead I chose to give myself a moment of sanity and treat Arianna as if she was normal. Then moments later one of the questions lead into the immunology side of Arianna's care and from there my 'normal' went out the window.

So to sum things up from the appointment. We have decided to try and schedule the consult with the immunologist and our pediatrician some time in July. The pediatrician has to make this appointment so she will let me know when that will be. I'm just so happy she is willing to go with me and help me understand all this a little better. She then told me they were unable to get the MMR shots individually and if I wanted Arianna to get her measles shot she would have to go to the public health department. She highly, in fact out right told me, not to take Arianna there....so we are NOT getting the measles shot until after we talk to the immunologist in July. Arianna was suppose to get her chickenpox vaccine today but since that is a live vaccine as well the pediatrician did not want to give that to her. It just amazes me that she feels so strongly against it when the immunologist said it was okay. I'm just following my gut instinct and something tells me she should have the live vaccines yet....and thankfully our pediatrician agrees. She doesn't feel comfortable putting Arianna at that kind of risk giving her the measles vaccine but stressed to me how catastrophic it would be if she contacted the measles virus. So, in the meantime, she says to keep doing what we've been doing and only taking her to the selective places we feel are okay. She did get her Hep A shot today and did very well.

One thing I brought up to her was something I noticed with her legs several months ago and noticed it again the other night. Arianna's seems to have bowed legs. I asked the pediatrician today and she said Arianna has mild tibial torsion. This is nothing to be concerned about, most children grow out of this, but it makes sense why Arianna walks with such a wide gait. We are seeing the orthopedic doctor in August so I'll talk to him about it then and see if anything needs to be done. We had seen the orthpedic before switching to our new pediatrician so she asked what our followup in August was for and I explained the 1 % scoliosis that was diagnosed. She asked to look at Arianna back and before she did that, I told her I strongly feel the curve has gotten worse. This is something I noticed about a month after our appointment with the orthopedic doctor. As soon as she lifted up Arianna's shirt she said, "Oh yeah, there is definintly a curve doing on. She said not only does she have a "S" curve but also a "back and forth" curve. I thought there was something funny about that because you can see her spine at one point, then the farther up her back you go it gets flat and you can't see the vertebra. So I am now worried about the scoliosis progressing and what the doctor will say when we visit in August. The whole...wait and see stage...which I hate. One thing the orthopedic doctor mentioned at our initial appointment was if the curve had worsened she might need surgery. So once again I'm a little worried but feel better after talking to the pediatrician today. I told her what the orthopedic doc said about surgery and she said we will definintly get a second opinion if that is what happens. I really love this doctor! The pediatrician did say it possible that Arianna would need a back brace when she starts puberty because females have a rapid growth curve when they hit puberty. I know, I know...don't think that far ahead but that is what she said.

So for now I'm just waiting for the immunology appointment and will drive myself nuts trying to figure it out on my own in the meantime.

Thanks for checking up on my baby girl. I have some really cute pictures but for some reason my camera won't download my pictures anymore. UGH!!! So I'll have to work on that....