Whats been happening

I know I've neglected to post on the blog lately so I'm going to bring you all up to speed.

Speech

This Tuesday Arianna had speech therapy and completely impressed her therapist. Arianna's new words are 'up' and 'wow.' It's so good to hear her vocalizing more. She is saying things like 'ash' for crash, 'fff' for fish, and a few more I can't think of at the moment. She is mimicking ALOT so that is great cause the next thing will be putting those sounds together!!! During our ST session I received a phone call, which leads me to my next subject....

Nana

My mom was calling to let me know my Nana (my grandma on my moms side) was having a stroke. This news was devestating and I was crying so hard the ST got her things and left. She feelt bad but we were done anyways and I couldn't think straight. The hardest part was that I couldn't go to the hospital. They took her to the ER by ambulance and immedialty got her in to CT to check for a bleed. They have a strong blood thinner they can administer ONLY if there is NO bleed and there is only a 3 hour window of giving this medication after the first signs of a stroke. So the prayers started and the waiting began. As they raced against time they got the results...no brain bleed...so they gave her the medication. My mother said the meds helped and she started to improve. Her speech was slowly coming back and her mouth function was returning. THANK GOD! They ended up giving the medication, I believe 20 minutes before the 3 hour window was up. That was a miracle from God! I was able to get down at 5:15pm to see her once they got her settled into ICU. It is always hard to see someone you love so much sitting in ICU. She looked good and from I'm told I probably would of had a hard time if I saw her earlier. I am so emotional when it comes to my family and this really was a hard thing for me to deal with. But I was happy to see my Nana give her a kiss and tell her I love her. Then I had to rush to the other hospital because it was our first support group meeting....

Support Group - Mended Little Hearts

I was late and felt horrible but after explaining what happened to my Nana everyone understood. I think our first meeting went very well. We had 6 heart families, one was our 34 year old survivor, and Alicia a friend from my moms work went to help me since my mother had to stay with my Nana. I got alot of great feedback and people are already volunteering for positions. We will have our meetings the first Tuesday of every month at 6pm at UMC. I'm trying to get a different room for our meetings so I'll let you all know the room number once I have it. I'm so excited about whats going on and I constantly meet new ways to get our local hospital involved. There is never be a family in Tucson that has to go through the CHD world alone. It's not a group I wanted to be apart of but I'm meeting some wonderful people along the way! Including all you great online friends!

Cardiology Appointment

Yesterday was Arianna's follow up with cardiology. I was nervous as always but happy to see our cardiologist. He took a listen to Arianna, asked how things were going with pulmonary, and got pretty irritated to hear we haven't even had a pulmonary visit. He works at their clinic tomorrow so he is going to make sure they know he is concerned that no one has taken the time to have a clinic visit. I told him what the first pulmonologist said about this just being trauma and that we don't need followup. He laughed and say, "Are you serious?!?!" He went on and explained that they do thousands of heart surgeries and they can't say it's just cause she had OHS and anesthesia, so that makes me feel better knowing we're getting a second opinion. Then we talked about her weight and I'm not sure if I'm right but I think she was 19 pounds 2 ozs, but that is with all her clothes, a diaper, and shoes...so probably haven't gained anything. He was pleased to see a significant weigh gain since February, but once again I don't remember what he said she weighed then. I'm just going to wait until our appt with the pediatrician tomorrow since we will get a more accurate weight. So...the PC says she sounds great, looks great, energy seems good, and the CT scan didn't show anything that they didn't already know. He said her right ventricle is generous, so enlarged but not more than it should be, and he is not concerned about her heart function at this time. He did remind me he will want to do more baseline testing around 7-8 years old but until then he is comfortable taking her off the Lasix! I am so excited...my baby is drug free! She has been on Lasix for almost a year so I'm a little nervous but have such confidence in our PC that he wouldn't take her off it he didn't feel comfortable.

Immunology

I got a call from the immunolgy nurse a few days ago telling me they have the results and the doc feels comfortable giving the MMR to Arianna. I was busy and said okay then hung up. Then a few minutes later I realized the doc told me HE would call and go over these results in detail, fax me a copy, then tell me when to schedule our next followup. I called back and told the nurse I would like to talk to him after I told her I felt like he has been blowing me off. She reassures me that isn't the case and she will have him call me. Here we are 3 days later and no return phone call. I am beginning to not like this doc. Andrea...I feel your pain about constantly having to bug people to take care of you child. So I am going to get Arianna's labs myself today and try to understand what they say. We are scheduled to see the pediatrician tomorrow for the MMR vaccine so I'll talk to her more about my issues with the immunologist and maybe our pedi will help answer some of my questions.

I think that pretty much covers everything. I need to get off here and get ready to take Arianna to her Aunt Lissa's while mommy has her own doctors appointment. It will be good for Arianna to get out today!

Here are some pictures I took last night. This is Arianna's play room off of the living room. We put our pet turtle in there and she has a little stool to stand on when she wants to see him. TOO CUTE!