We got a wonderful report from the cardiologist today! They did an echo and everything looked the same. We will go back in August to see our cardiologist. At this point, they are ruling out her low sats as being a heart issue and throwing it back on those lungs. We see pulmonary in August so we will talk more about it then unless she gets worse. As of now her sats are back in the high 90's and she is doing well. She does have a fever that we are able to control with Tylenol but that is her only symptom.

I just have to brag about how wonderful Arianna did during her echo. This time I actually practiced the echo yesterday with her so I was able to explain to her what was going to happen. It was kind of sad because the whole time she kept saying, "no boo boo" and gave us a worried look. That breaks my heart that she is at the age to understand what tests hurt.

Since we are talking about Arianna's understanding I just have to comment about something else real quick. Last night we were laying in bed trying to wind down and I put the tv on Discovery Health. It was about a little girl with a genetic condition and she was going to see her doctor. I noticed Arianna got really still and was actually watching the tv. I decided to take this as an opportunity to show her that other little girls have to go see the doctors too and get all the same measurements (height, weight, etc). Normally she is shy about getting her weight and height checked, well not today. I was reminding her about the little girl we saw on tv that did all the same things and she just shook her head yes with a big smile on her face, but she still freaked out about the blood pressure cuff so they didn't do that one on her.

This afternoon we did some running around and by the time we got home Arianna's fever was creeping back up so we gave her some Tylenol and she took an hour nap. Of course that hour nap meant she was up till midnight. That is the reason I don't let her nap but my baby wasn't feeling all that great so I couldn't deny her some beauty sleep.

We did go out to eat for dinner tonight for the first time since October. I was very hesitant about it since we just had a confirmed case of the swine flu here in Arizona, but there was hardly any people at the restaurant and they stuck us in the back corner.

Sorry if I'm all over the place in this post. It's pretty late and my brain is only partially functioning.

To the doctor we go...

Chillin' watching t.v.

Smiling for the camera!

Arianna had a rough night again last night. She was coughing and couldn't get comfortable. I checked on her about midnight and she had a low-grade fever. I hooked her up to our new pulse ox machine, which I'm in love with, and she was satting at 85%!! Okay...that is not normal so I monitored her for awhile and sure enough she was staying in the mid-to-low 80's so out came the oxygen. Urgh!

I woke up around 7am and her sats were 93, but when I looked at her the cannula was out of her nose. Guess I didn't do that good of a tape job. I think our problem is also that I only have infant cannula's and those don't seem to stay put very well.

She woke up around 8:30 and I checked her sats without oxygen and she was running between 89-91 which is low for her when she's awake. Then it hit me...HELLO...we do have an albuterol inhaler. I gave her a treatment and rechecked her at 10:30 and she was satting at 95%.

I called the pediatrician anyways and we have a 3:30 appointment just to get checked out. She still had a low-grade fever this morning so maybe she is fighting something off. If she is like this with a summer cold...I don't even want to think about what the winter will be like. Good thing my daughter likes masks cause that might be the only way she is going to get out of the house.

We got a call this morning from the radiology department at the hospital and scheduled Arianna's follow up renal (kidney) ultrasound for next Wednesday. We have our appointment with urology next month so we need to get this done ahead of time. And yes, I will be getting the ultrasound results before so I'll already know what is going on. :)

I'll update when we get back from our appointment.

MMR Reaction?

I'm beginning to thing this is a reaction to the MMR vaccine. Yesterday we noticed some red dots on Arianna's back which I thought it was just from a heat rash. Well this morning she has them on her chest, stomach, back, bottom, and arms. I called the pediatric nurse again and she says this is common to have a rash 7-12 days after the vaccine. She knew how scared I was for Arianna to the MMR in the first place so she was really sweet to me. She told me to get some Bendryl and see if that helps the rash. I told her if she still has the fever and rash by tomorrow I wanted to bring her in to get looked at since it will be 11 days after the vaccine and I really don't want to get into the weekend like this. I know...crazy mom...but it's my baby and I need to be reassured she is okay. It's not like she has a normal immune system and she is at a higher risk of getting these viruses. But I put my faith in God that she is okay and this will all clear up on it's own.

All over the place with this post

Arianna still has a fever but is finally playing and acting more like herself. This was us earlier this afternoon taking a nap. She actually slept for 4 hours!!! Dad thought it would be cute to take a picture of us with my camera phone....too bad he forgot to shut the volume off and woke us up, but only for a second.

We were passed out!

I'm not sure but this fever could be due to the MMR vaccine she had last week or the fact that she is cutting another tooth. Who knows?!?! It's just weird because Arianna's sister and my sister are both sick today as well and all 3 of them have different symptoms. We spent Sunday together for my birthday, which was yesterday, so who knows what is going around. Here's a birthday picture I just LOVE! She is really into blowing out candles so I can't wait for her 2nd birthday!

And guess what I got for my birthday....

An iPod!!!!

I have been wanting one for a few months but didn't think I would actually get one. I feel so spoiled now. Now when I get irritated I just put on my headphones and tune everyone and everything out :) I can't wait to dowload some of the teaching CD's I've been listening to. Since we can't go to church that often I get my sermons in this way.

I also wanted to share with you my birthday verse. I know I shared this with you all before but for those who didn't see it. Check out http://www.birthverse.com/ and see what your birthday verse is. Here is mine:

Romans 8:18 NIV

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

AMEN!!!

Okay, I know this blog is normally about Arianna but I have a prayer request for myself. This Monday I went to see an orthopedic doctor for my back. I have dealt with back pain since I was a teenage and hip problems since I was born. I had some x-rays taken a few weeks ago and my primary doctor diagnosed me with something called 'Pars Defect'. Basically the pars is the articulating part of your vertebrae and I was told that I have two fractures there. So I went to the orthopedic doctor who did an evaluation and reviewed my x-rays. He told me I indeed have a bilateral Pars Defect on the L5, spondylolysis (basically meaning break), and spondylolisthesis (slipped disc). Here is a diagram to show you exatcly what it is:

I was not very happy with this news at all but hopeful when the doctor said this can stabilize over time if I start taking care of myself. He is sending me for physical therapy 2x's a week for 6 weeks to help teach me the exercises I should and should not be doing. He did tell me to stay off my elliptical which really sucks because that is the only exercise machine I own. The main thing I have to do is build my core stregnth, which we all know I need to do, so this just gives me more of a motivating factor. If the pain gets worse then the doctors said the only treatment option would be surgery and that is not what I want to do. So, for those who pray please be in agreement with me that this will stabilize and we can keep the "s" word as far away from me as possible.

Thank you!

Fever

Last night Arianna spiked a fever before bed so I continued to watch her through the night. She woke up alot and was very cranky. Even with the Tylenol her temperature went up to 102 which made for a worried momma. Thankfully when she woke up this morning she wasn't burning up and her temp is at 99.6. I'll keep the Tylenol going until she is back to normal. I checked her pulse ox and heart rate last night and she was satting at 91% and had a heart rate of 125. At least I can check this at home without having to go into the doctor.

Sorry for the lack of picturs lately I still need to go buy batteries for our camera but I promise to get some this week.

We might know whats wrong

Okay…we think Arianna has roseola, which would explain the high fevers and sudden rash once the fever broke. (Thanks to Mina and Grams) I never heard of it before and after researching I found out its pretty common with kids under 2 years of age. We’ll talk to the ped tomorrow and see what she thinks as well. There is no treatment just the Tylenol/Motrin for the fever. Some people with compromised immune systems need to be on antibiotics so we’ll just double check on that, but since her immunology studies came back normal I doubt she’ll need to be on anything.

Tonight was so much better than the past 3 nights. She was more active and less fussy…notice I just said less fussy. She even went to bed earlier than midnight…YEAH! We have our appointment with the cardiologist at 8:15am then the peds at 10:15. Its so nice that they are in the same building.

Miss Cranky

Well not much to report here. Sorry ladies for keeping you on edge all day. Arianna broke her fever this morning and finally was at a normal temperature for a little while this afternoon. I really have to stay on top of her motrin/Tylenol or it will spike right up. I laid her down at 3pm for a nap and apparently I was tired too cause we both didn’t wake up till 5pm. Good thing I had a roast in the crockpot so dinner wasn’t too late. She spiked another fever this evening and was a total crab. I mean…fussy, fussy, fussy. I feel so bad for her. I did get a call back from the peds office and explained to the nurse Arianna’s symptoms and she told me the fluenza virus has been going around bad. They have a lot of kids in with fevers and cold symptoms I did tell her about my concerns with her recent respiratory illness and being on oxygen but she didn’t seemed concerned….I swear no one at that office ever seems concerned. She didn't think the teething was causing the fever since it wasn't a low-grade fever. I told her I had an appointment on Wednesday to met the new pediatrician and she didn’t think we needed to come in before then. As long as the Tylenol/motrin is helping the fever and she is still drinking liquids, there is not much else they can do. I forgot to mention to her that Arianna had puffy eyes today and it was even a Lasix day. You heart moms know how those puffy eyes can freak us out. I’m glad we are seeing our cardiologist Wednesday to make sure her heart is thouroughly checked out. So in the meantime we’re just gonna keep doing what we’re doing and hope it goes away.

Tomorrow is our appointment with the orthopedic doctor to discuss the finding in Arianna’s MRI, which she had done in December. They found what is called a butterfly vertebra on her T-10 which I’ve heard can be related to scoliosis. Her spine was in total alignment right now, which was great, but we need to get in to a doctor and establish a relationship so he can follow up on this. He’ll be reviewing the MRI tomorrow so I’m anxious to hear what he has to say.

I’m hoping Arianna doesn’t spike another fever tonight while sleeping. I just gave her some motrin which I’m hoping does the job. She has been really sluggish and grumpy in the morning and we have to be up in 6 hours to get ready. Poor baby is going to be tired. Then we have our OT coming over around 11am. I’m not expecting Arianna to eat much but it will still be nice to touch base with her and get any new ideas she may have. I’ll update as soon as I can tomorrow.

I don’t know what is up with all these kiddos being sick. Arianna is still battling a fever. This morning she was 103 and really cranky so we had to cancel our hearing test. I gave her a bath then put her back to bed. Her sats are staying in the 90’s except for a few dips last night when sleeping, but nothing that would require me to put the oxygen back on. I really hope this is just the teeth causing this and nothing else. The good thing is she is still drinking liquids so I don’t have to worry about dehydration…always something we worry about when our babies don’t feel good. Well I better get a few things done while she’s sleeping cause she won’t let me put her down when she’s awake. I’ll let you know if anything changes.

Still feeling yucky

Arianna had a really rough night but surprisingly she woke up in a good mood. I knew she wasn’t feeling totally herself because she laid in bed watching cartoons for about 45 minutes. I didn’t mind the extra rest but I hate seeing her like this. Then as she started moving around more you could just see it in her eyes that she still was under the weather. I gave her a nice bath then we went out to watch Daddy fly his radio controlled airplane. Arianna had a good time and really enjoyed being outside but after an hour she started feeling warm and sure enough her temperature was rising so we headed home. She does not want to be put down again so I ended up laying in bed with her for an hour to make sure she got some good rest. Right now she is laying on my chest and still has a temperature of 100.1. Looks like I need to give her some motrin.

Tomorrow Arianna is getting her second hearing test. She had one while in the NICU which she passed but because of the DiGeorge Syndrome and delayed speech they want another one done after 1 years of age. This is an early morning appointment and all the way across town so hopefully she will be feeling better to tolerate the long car ride. She cried the entire time we were in the car today. This is so hard for me to hear because we never let her cry as a baby. I still notice her lips getting blue when crying and that really freaks me out. The docs say all babies get like this when crying but when you’ve seen your childs entire body look like that it brings back some not-so-good memories.

While I was laying down with Arianna I was just watching the show, “Mystery Diagnosis” on discovery health…I’m addicted to that show! And it was about a child born with a CHD (narrowing of the aorta). She was having trouble gaining weight and didn’t have any weight gain from the age of 1 to 2. They started naming all these signs and symptoms this little girl had and all of it sounded like DiGeorge Syndrome and I was almost 100% sure they would diagnose her with it when they started talking chromosone disorders….but instead she was diagnosed with Turner Syndrome. I was watching this show and listening to the parents talk and I swear it could have been me on the television. It’s amazing to think how you can have so many of the same emotions as someone you have never met before. Even though this is a different syndrome it is still very important to me. Before Arianna I never knew how important genetics was…I’ll be honest I didn’t even know what a chromosone was. It is very important to get awareness out about all types of genetic disorders not just DiGeorge Syndrome. As the logo says on the VCFS website “Knowledge is Hope”.

Bad Day

Arianna is not having a good day. She had a rough night last night, up a lot, crying, tossing, and turning. Finally at 5 am she wanted mommy to get up and rock her. Her little body was burning up so I checked her temperature and sure enough she was 101. We’ve been giving her Motrin and Tylenol today which breaks the fever but only for 2-3 hours between doses. She won’t sleep lying down so it looks like I might be camping out on the rocker tonight. I feel so bad for her, she is just miserable when she has a fever. Everyone tells me its because she is cutting teeth. She just cut her 5th tooth yesterday and I think she might be working on another one. I just think it’s weird because she never got a fever with her other teeth. Who knows….I just pray it isn’t anything worse. Her sats are remaining in the mid 90’s, which is a good thing. She hasn’t been in the mood to eat or drink much the past few days but tonight while we were sitting eating dinner I had her on my lap and tried to feed her some of mac & cheese (baby food), since she seems to be back in the baby food stage. She didn’t want ME to feed her but when I gave her the spoon she went to town trying to feed herself. It was so amazing to see her determination in feeding herself with a sppon. We have never seen her do this before. I think we’ll try and get some better equiped spoons for her to use since she had such a good time. She was a total mess by the end but who cares. Then for dessert she fed herself half a serving of pudding. It was so good to see her eat like that. Hopefully this will continue. We weighed her when she got her RSV shots and she had lost an ounce since the week prior. I know my heart mommas know how hard it is to just put 1 ounce on our kiddos. So hopefully this feeling yucky won’t be accompanied by weight loss.

Right now she is running a temperature of 101 and Daddy is on his way out to buy more Tylenol. Hopefully she will start feeling better soon.