Graduation

I know I've been the biggest slacker with pictures lately so here goes. Last Thursday Arianna had her graduation cermony from the Early Intervention Program. It was so amazing to see all the kids with different abilities going up to receive their diplomas. Arianna clapped for every child and when it was her turn she was SO excited. I can't believe I didn't take the video camera with me....bad mama.

Not too excited about the cap

Receiving her diploma from Sherri (early interventionist)

Eating watermelon.

Ari was looking at Sherri instead of my mom for this picture.

Here is a quick video from today. I'm constantly amazed at how much she is talking now!

Photo and video editing at www.OneTrueMedia.com

Happy Heart Day!

I woke up this morning like every other morning until I sat at my desk and looked at the calender.....May 21st.

Just 2 years ago today I was packing hospital bags, saying many prayers, giving Arianna a bath in that special surgery soap and looking at her scareless chest.

On May 22nd, 2009 Arianna underwent open heart surgery. I'm not sure which day was worse...the day before or the day of. The day before I was so scared and just wanted to pack up our things and run away, but I knew the surgery was needed to save her life. I kept thinking all the "what if's" and "how will I hand my child over." There really isn't anything you can do to prepare for that day. Then you have the day of surgery which was the hardest day of my life....handing my child over to an anesthesiologist who will take her into an OR where they will cut open her sternum, stop her heart, drop her body temperature to a crazy low degree, recirculate all her blood through a bypass machine and fix her heart....at least that was what I was hoping for.

I don't use the word fix anymore because she will need more heart surgery but on May 22, 2009, I really thought her heart would be fixed. I now know it was the denial I was living in. I feel like it wasn't until a few months after surgery that it really hit me that Arianna will need to go through that all over again. I try not to dwell on it too much.

So today I found myself reflecting back to what my baby girl went through and how very proud I am of her. I've cried tears of sadness and tears of joy. In a way I feel like we're 1 year closer to her next surgery but I keep pushing those thoughts aside.

Tomorrow we will be going to get a heart cookie from the mall and let her pick out a new toy. In our family we celebrate May 22nd as "Arianna's Happy Heart Day!"


(I'll post pictures this weekend)

News clip!

Life is good!

We have had a wonderful 2 days and yet again I forgot my camera both days.

Yesterday we started our day out by doing an interview with one of our local news stations. They are doing a piece about Mended Little Hearts of Tucson and had me talk about how and why I started the group then featured one of our families. I am so excited to see how it turns out! I'm not sure when it will air, but I will post a link to it as soon as I have it. :)

Then today we went to my sisters and went swimming! Arianna had a blast. We had one of those swimming suits with the floaties inside and she did really well with it. Then she wanted to just sit on the raft with me so I changed her into the regular bathing suit. I got to do a little tanning and 15 minutes was all I needed to turn into a lobster. I know I'll regret it tomorrow.

After swimming I was able to pamper myself and go get my hair highlighted. I have never done that before and I'm a total freak when it comes to people messing with my hair. I had them only do 7 foils on it and I'm ready to go back for more. LOL! I could get used to this pampering thing! :)

Tomorrow morning I have a visting training for my support group and then off to my sisters for a nice afternoon by the pool and having some drinks!

Since I don't have any pictures for you today I thought I would post some pictures from exactly 1 year ago. I can't believe she was so little still. My baby is defiantly growing up.

Miss Attitude!

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.

UTI/Bladder Infection?

I think Arianna might have a UTI or bladder infection. I started suspecting this last week when she said "pee pee boo boo" but it was only once so I didn't give it much thought. Well this afternoon I left her at my moms and when I called to check on her my mom said she was crying and saying her pee pee hurt. The rest of the day was the same but got worse in the evening. She cries so hard when she pees and has hardly passed any urine. I tried to get an appointment scheduled tomorrow with the PCP but they never called back. I'll call first thing in the morning.

I just gave Arianna her breathing treatment because she is still satting on the low side. Ugh...what is going on with her?!?! She isn't coughing and her runny nose is practically gone. It will be nice to have her pediatrician listen to those lungs and see if anything sounds different. I did get an appointment with the pulmonologist but that won't be till July. We'll see what the doc says tomorrow.

So I just had to come back on and update because I'm up and worried. I've had a long day and maybe that isn't helping my situation. Arianna was satting at 80 when I checked her right before going to bed. She wasn't breathing funny so I decided to change the leads on the pulse oximeter just to be safe and I got the same reading. I put the oxygen cannula on her and she woke up screaming in pain about her pee pee and knees. All I could do was cry. I have never felt so helpless before. My daughter hurts and doesn't understand why I'm putting this nasty plastic tube up her nose. My mind is racing and I can't sleep. I have to give her another breathing treatment at 2:30am and then take Robert to work at 3:30am. Agh!

Ari got her own personal computer from Grams. Thanks Grams!

Passing the time while taking her nebulizer.
Playing Wubbzy online.
I can't believe she is playing with my old Barbie doll house!

Mother knows best

That's all I can say. Sometimes I wish people would just listen to me.

I put a call into the pulmonary clinic and spoke with the triage nurse today (well guess it's technically yesterday). I asked about getting a nebulizer and I heard, yet again, how inhalers work just fine if used correctly. They asked if Arianna does 6 deep breaths in with the inhaler. Okay, come on, she is only 2 1/2 years old. I just got the kid to quit screaming when she sees me pull it out. After talking about why I think we should try the nebulizer, they called it into our home health people and 2 hours later it was delivered. I have to give them credit because the doctor said it would take a few days. The delivery man said when it comes to nebulizers they know its because people are having respiratory issues and no one should wait to get that kind of relief. How sweet!

Once Robert picked up her medication from the pharmacy and got home Arianna already cried herself to sleep because I had to pull the oxygen back out. I gave her the 1st nebulizer treatment and she started that wonderful coughing, which is a good thing to get all that nasty junk out her lungs. Her sats jumped up and the oxygen was put away. I know Arianna is happy about that. I just checked her sats right now and my princess is satting at 93 and sleeping like an angel.

I am just so relieved we have finally found something that works for her. I feel a huge weight taken off my shoulders.

The pulmonary nurse wants us to schedule the first available appointment for Arianna to see the doctor. She just didn't feel comfortable having her wait till August for a follow up. I'm sure they are scheduled weeks out so we'll see what we can get.

Our morning so far

Arianna has been one unhappy little girl today. She made it throughout the night without oxygen, but this morning I had her on 2 liters for 2 1/2 hours. I just took her off and she is holding her own. I did put a call into the pediatrician to ask about getting a nebulizer machine. Right now she just has the albuterol inhaler and sometime I wonder if the nebulizer would work better.

I had to cancel OT and early intervention this week because she hasn't been feeling that great. I did talk to the EI specialist today and she said they are planning a graduation picnic in 2 weeks for all the kids that will be graduating out of Early Intervention this year. Since Arianna will be graduating in November we are going to try and make it out. I guess they do the whole cap and gown thing. Too cute!

Well it's time to try and get her to eat. That has become our challenge lately again.

Heart Walk & More

Saturday was the heart walk and we had a booth for our support group. I was not able to walk but my family and friends walked with Arianna. Here's a slideshow from Saturday.

Photo and video editing at www.OneTrueMedia.com

Saturday night Arianna started with a cough and runny nose which just got worse during the night. Luckily, her sats stayed just borderline of needing oxygen.

Then this morning Arianna just sat on the cough and colored for about an hour. I didn't think much of it so we got in the shower and I got her dressed and ready. She is not coughin or anything but I figured I would check her sats. Well I'll let the picture speak for itself.



Right after I took this she dropped to 83 and the good ol' oxygen came back out. She is super mad at me about it but its for her own good. Her inhaler isn't helping so I'm just going to keep the oxygen on and spot check her throughout the day.

Right now she is coloring on my bed and doesn't want to leave. I think she just feels safe in there. She doesn't understand she can still walk when the cannula is on so she sits all day.

Hopefully this passes soon but honestly I'm a little concerned her sats are so low, especially with the recent history of low sats. If she doesn't improve by tomorrow I'll make an appointment with the pediatrician. I'm just trying to keep out of the doctors offices with the recent 6 confirmed cases of the swine flu in Tucson.

****UPDATE*****

It's 5pm and Arianna only needed the O2 for about an hour then she jumped back into the 90's. Her cough is getting better but we are keeping up with the albuterol. You can tell she just isn't herself so we'll definintly put the O2 on tonight if not sooner. Just wanted to tell everyone thanks for the prayers.