Trip to Colassel Caves

We decided to take the kids to Colassel Caves. This was my first time so I was pretty excited too! I had no idea what I was in for when I strapped Devin on and said let's go...

Arianna was a little scared at first but she had her best bud with her so she was fine!

My nephew Bryce

My oldest nephew Shawn. Yes, Shawn, I did post this like I said I would!

34 Weeks!

Of course I had to start off with a beautiful picture of Arianna!

So today marks my 34th week of pregnancy. I saw the doctor on Friday and she told me if I was to go into labor at this point they wouldn't even try to stop my labor. Kind of freaked us out. That being said, I went and bought everything I need for my hospital bag. :) Things are so well planned this time and a totally different experience than last time. Now we just need to put the finishing touchs on the nursery and we'll be ready for our little man!

Arianna is continuing to do well health wise. On the other hand, she is starting to REALLY push my buttons. Not sure if it's just the age or the baby arriving soon that is making her act out. Hope it's short lived.

Robert took the kids fishing today. Arianna didn't catch any fish but she was happy to pose for the camera!

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!

Smile

Isn't that just a beautiful smile?

This is the picture that really got me questioning Arianna' smile. I've noticed for awhile that she has an asymmetric smile. So I started looking into it a bit and was shocked to find out that children with 22q11.2 Deletion Sydrome can have what is called "asymmetric crying facies." This is actually one of the symptoms that alot of children have that has lead to a 22q diagnosis. I feel bad cause I thought for awhile that she was just trying to make a silly smile for me....nope...this is just her natural beautiful smile!

I'll post the rest of our party pictures in the next post. I use this blog as a journal for myself. It's really amazing to go back and read all that has happened....and new diagnoses...over the past 2 years.

Approved....

for Synagis!!! (RSV shots)

I got a call from Los Ninos (the clinic we've gone to the past 2 years for Arianna's synagis shots) telling me we needed to schedule an appointment. I was excited but then asked her to double check that we were approved cause no one from the pediatricians office has even called me about this yet. She double checked and we were approved for 5 months!!!!

After the excitement wore off I felt really bad because this means Arianna will have to get 2 shots every month for 5 months and these shots hurt cause it's a thick serum. Then she gets an extra shot in December at her 2 year old check up. Oh well, it's better than a hospital stay with multiple blood draws, IV attempts, etc.

It's rarely heard of for a child over 2 years old to get approved for synagis so we are extremely blessed.

We go in November 10th for her first round of shots. I'm so happy her little lungs will be protected from nasty RSV this year. :)

And for your picture fix, here is a picture of Arianna watching Wubbzy on my computer.

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!

First Ponytail

I have been waiting for this day for a long time. Arianna can finally put her hair in a ponytail! She looks so adorable I just had to share a picture with you all. Hope you enjoyed it as much as I did...if that's even possible! :)

Not much else going on. For those who are curious, I did just fine yesterday leaving Arianna all day. I have to admit it was kind of nice to just get on the freeway and go without all the whining and crying. Don't get me wrong, I love my baby girl but sometimes a little alone time is good.

For whatever reason Arianna just refuses to eat anything but fruits and veggies so I'm getting a little irritated about that. Well I have to go ATTEMPT to feed her dinner. Hope you all had a wonderful weekend!

Another day...

Not too much going on around here. I had a rough day yesterday but feeling a lot better today. I guess being a stay at home mom can get to you at times and when your child does not want anyone but you ALL the time you don’t get much of a break. Don’t get me wrong I LOVE being home with Arianna but I think I need to start getting some mommy time so I don’t go nuts.

Arianna did have a little accident yesterday and hit her eye on the computer desk. She got the sharp metal edge and put a nice gash in her eyebrow. Poor baby she was bleeding like crazy and kind of freaked me out. I think this is her first official boo boo..well besides the huge scar across her chest. Here’s a picture of her today, sporting her bandaid and her big smile under that paci!



So for those of you who remember my comment about Arianna sleeping with us till she’s 15, well I decided to try and get her to sleep in her bed….but here’s the catch…it’s really an exstension of our bed. She has one of those 3-1 cribs, which turn into a toddler bed/daybed, then a full-size head/foot board. REALLY NICE! So I decided to ask Robert to convert the crib into a daybed and push it right up against our bed. It’s actually the same height with just a small gap in between beds so I just stuffed a blanket to fill that up. So last night was the first night sleeping this way and she stayed in her bed the whole night. She woke up a few times, rolled over, felt my face then went back to sleep. It was so nice not being kicked in the head or stomach all night. She is a very wild sleeper and normally ends up with her head at the opposite end, which she did last night. I know technically she is still sleeping with us but it’s a step out of our bed.

Today we were suppose to have speech therapy but after careful consideration we have decided to look for a different type of therapy. We still have Janet, Arianna’s OT, which works a lot with her feeding and oral motor and Arianna has shown a huge improvement in these areas. She has had 5 days of excellent eating. She is totally into feeding her self with utensils...it's the cutest/messiest thing ever! They are still looking for a new therapist and don’t know how long it will take to find another one. Even with Arianna’s signing the communication barrier is becoming more of an issue for us. I am trying my best to learn as many signs as I can so we don’t have the frustrations. Guess I need to start buying the Signing Time videos for her since she knows all the signs from the Baby Signing Time videos. It was so cute she signed “baby doll” today. This is good to see her putting the two signs together. (Hey Pam, how did Madison become so good with her signing? I’m open to suggestions!)


I guess that’s it for us. She just laid down for her afternoon nap and I’m seriously thinking about joining, her but I have way too much to do. The only thing going on this week is our appointment with the immunologist…yuck..we’re always given a lab slip when we leave his office. ☹ To be honest, I forgot which tests need to be done. Oh well I’ll find out on Friday. Hey Kathy…ever get Isaac’s labs drawn? Welll better get off of here. Thanks for checking up on us!

GI appointment

Just a cute snap shot from this afternoon. I LOVE her new outfit!

We had a good meeting with the GI doctor today. He was very pleased with Arianna’s growth. She weighed 18 pounds 6 ozs, which is a 2 oz increase since the nutritionist a few weeks ago. The GI doctor last saw Arianna in Nov and since then she has had almost a 2 pound increase and significant growth in her length. He reviewed the results of the upper GI and swallow study and was happy to hear these were negative. He said she is doing well for her age and at this point we will only need to do followup. We will go back in 3 months just to make sure she is progressing nicely. It was so nice of Janet, our OT, to accompany us to this visit. Even though it was short and sweet, just knowing she cares that much to go means the world to me.

**Forgot to tell you…the doctor checked her umbilical hernia and said that she for sure won’t need surgery. It should close up completely without any intervention needed. Yeah..we are so excited!**

Pony Ride

Arianna got to ride a pony at the clinic today. They are there a lot but never before has she rode one. She did so good, sat up all by herself with only minimal balance from us. I didn’t have my camera but thanks again to my camera phone I was able to capture the moment.

Arianna once again wouldn't sleep in her crib so she slept with mommy and daddy. I have a feeling she will be 15 and stil sleeping in our bed. :)

She definintly needed the oxygen this morning so looks like we will be keeping this nasty thing on her nose. I did take the cannula off her nose for about 30 minutes to give her a bath and let her walk around a bit. When I checked her numbers they were back in the low 90's so I put O2 back on her but the 1/4 liter wasn't doing much help so I had to bump her back up to 1/2 a liter. Maybe she just over did it with all the walking and her body needs more O2 today. I wish I could just leave her at a setting and not mess with it. That was the plan wasn't it? But after seeing her hold such good numbers last night off oxygen I thought we would try it again. Guess she isn't ready for that yet. She's been on oxygen for 2 1/2 weeks, I guess I didnt' think she would require oxygen more than the hospital stay so the longer she's on it the more I want to try to get her off. I feel like if I just give in and not try weaning her then it's like I'm accepting this and I don't want to accept it. Gotta run....

No cannula!!

This is the first time Arianna has held good numbers off oxygen since we’ve been home. I was changing her shirt and had the oxygen disconnected and thought I would check to see what her sats were and she was at 96! I waited 15 minutes and rechecked and she is at 95 so we took off the cannula in hopes that these numbers stay. I’m sure she’ll still need oxygen when sleeping but hopefully that’s it. I’m so happy she can walk around the house right now without being attached to something. She wasn’t walking this good before the hospital so it’s crazy to see how well she is walking…tube free!!!