Visit to the doctors office

We took Arianna this afternoon to get her varicella (chickenpox) vaccine. I was really nervous about it so Robert went with me. Thanks honey! Arianna was already cranky on the way to the doctors because she is working on getting another tooth, so I knew she would be a mess after the shot. She cried and wasn't very happy when she had to go back in her carseat. We stopped and got her some french fries and a shake but she was only into eating 2 french fries then fell asleep. She is sleeping right now and I'm constantly checking on her. They said to keep an eye out for any fevers or rash, which can be anytime up to a month after vaccination...WOW...thats a long time to look for side effects. I guess it just takes a long time for the immune system to react to the vaccine. I'm still very anxious even though everyone tells me I shouldn't be. I have cried more today than I have in awhile, which I'm trying to understand why. I know I should be jumping up and down with excitement that Arianna was able to get these vaccines but I'm just more nervous than anything. I keep getting nervous that she is taking such a long nap, her breathing is shallow, etc. What is my problem?!?!?! Why can't I just enjoy life and not worry about all these things!!! Even the nurse giving the shot kept reassuring me that Arianna has good t-cell function and I should really try to find peace with that. It's hard because we're not just dealing with her immune system but her lungs and I know right now her lungs need to heal. No, I don't want to keep her in a bubble, but I also don't want to have her in the hospital every month. Everyone comments on how well she is doing and that is contributed to her being home most of the time. It's like people don't get it sometimes. They think just because she is doing well at home she would do well out in public. I get her out from time to time. We go to the pet store, Target, walgreens, families houses, restruants (okay only a few times), but I'm just not comfortable taking her everywhere. Why do I still feel so different? Why does my heart ache so much for my little girl? Why am I sitting here crying, when I should be happy that Arianna IS doing so well. I don't expect any of you to answer these questions I guess for once I felt like I need to get my true feelings out.

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....

More bloodwork needed...

So I just got off the phone with the immunology nurse and this time they didn't lose the blood but they forgot to get a CBC drawn. I'm not sure how all this works and the immunologist is out of town so I'll have to wait to ask questions until he gets back. UGH!! I am thankful for the nurse who is trying to help me get things figured out. This still doesn't take away the fact that my baby will need to have ANOTHER blood draw. I am literally in tears over this. I can't stand that she has to have repeat blood draws because they keep messing up. :( I'm waiting to hear back from our pediatrician because she is the one who will coordinate with the labs on which tubes and such need to be drawn.

I also put a call into Lab Corp and spoke with the manager about this and she is going to look into it herself and get back with me. I really feel like no one cares and that is an awful feeling.

Oh I almost forgot....the nurse told me the immunologist said if I wanted to give Arianna the MMR vaccine, it was up to me but there is a risk. CAN YOU BELIEVE THIS GUY!!! Yeah, like I'll take that kind of risk. I have seriously had it with these doctors. I told this nurse that was ridiculous for him to say that and NO I won't take that kind of risk. I will wait another 2 weeks in hope that they get it right this time.

On a good note...I just got the shirts delivered for our Heart Walk tomorrow. So if you in Tucson and want to join us just meet me at the Tucson Mall at 7:45am (I know it's really early, but be glad you don't have to be there at 7am like me) You can park by American Home Furniture and you will see the tent from there. If you have any problems finding the place just give me a call at 520-406-5655. I will be speaking sometime around 7:30am and I'm so exciting to be taking Arianna on stage with me!!! I will post with pictures after we get home.