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.

We got the orthotic inserts!

This is what Arianna got today!

I have no idea what type they are but these are suppose to help her ankle pronation and flat feet and HOPEFULLY the knee pain. They are a hard mold that will hopefully shape her foot over time. We have to break her into them so it's an hour a day, then we add another hour, etc, etc. Arianna didn't seem to be bothered by them at all which was good. The guy from Hanger really liked her shoes so looks like we won't be getting any stylish shoes any time soon. There is just enough room for her foot and the insert and that is the most important thing.

If these don't help the knee pain then I have no idea what we'll do. She was complaining about her knees all day today which breaks my heart. Ibuprofen is a regular in our household now.

On another subject, we have put Arianna's bed back in our room because she is still sleeping in our bed and it's getting rather crowded. I am happy to say she has slept in her bed all night for the past 3 nights. One day when she is ready we will try the big girl room out again but I'm in no rush. I actually sleep better with her in our room. :)

Oh yeah, I can't believe I forgot this. We took Arianna to eat at Quizno's after we got her orthotics today. This was the first time since October we ate out somewhere. Okay, it's not a fancy restaurant but it felt SO good to be doing something normal and outside the house as a family. I was completely paranoid the entire time but it was still nice. She is not eating very well so only ate cheetos.

Then we came home and had our OT come over and work on some eating with Arianna. She is not eating very good at all lately but of course she ate like a champ for Janet. Agh..this girl made me look like a lier. Our OT gave us some really cool cookbooks for preschoolers that we can borrow. The authors are Mollie Katzen and Ann Henderson. The two books we have are "Pretend Soup" and "Salad People." It is so cute cause it gives you the recipe and tips for grown ups and then goes through a step by step pictorial for the kids to follow along. Our hopes are that Arianna will enjoy the preparing of food and want to eat more. She also thought it would be cute if we got aprons and hats so she knows its time to cook THEN EAT when we pull them out. You will not see any pictures of me in those hats so you can stop thinking about it. :)

That's about it for tonight. I have more to share tomorrow.

Preschool?

Arianna had speech therapy yesterday and we are happy to hear our ST thinks she may no longer need speech if she keeps progressing this way. She is saying 2 to 3 word sentences regularly.

Then we had our early interventionist come today and do our annual assessment/goals to prepare for preschool. Thanks right you read that correctly. My baby is going to be 3 in November and we're looking into getting her an at home preschool teacher. This program through TUSD is called Direct LINK. Her therapists are going to do her standardized testing on her in June and hopefully she qualifies for the program. So keep those fingers crossed!

Not sure if she will still need therapists when she turns 3 but if she does we'll try to get her current therapists approved through our insurance or see what TUSD can provide.

Arianna is doing great! Her brother has been here the past 3 days since he is on spring break and Arianna is loving every minute of it.

We are still waiting for her inserts to come in but hopefully we'll hear something next week.

Thanks for checking in on us!

My girl is back!!!

Thankfully, my girl is back! She didn't even need her inhaler today. She has a little cough every now and then but nothing too bad.

Ever since last week she has this redish patch of skin under her right eye that goes up the right side of her nose. She always rubs her nose, which I'm curious if she has allergies to something, but now I'm wondering what this red patch is from. After seeing Isaac the other day I'm thinking it just might be a DiGeorge thing. (He is looking much better Kathy!)

We saw Arianna's occupational therapist today and did her find motor evaluation. I don't think we have ever done one of these. I am SO proud to say Arianna is scoring at 28 months of age. She is only 27 moths old so that is wonderful new! Janet doesn't even think she needs OT anymore but with all the state budget cuts she is still going to put into our insurance to approve 6 visits a year. This way she can continue to see Arianna every few months, even after she turns 3 years old. Wow...my baby will be 3 this year!!!

I got a picture of Janet and Arianna today.

Then this afternoon we went to meet a co-worker of mine from Utah who is visiting her in-laws just down the road in Corona de Tucson. We meet her at the park but she didn't bring her children because they were napping. (Naps...what are those?!?!) Arianna had a blast and went on the slide several times and LOVED the swing. Of course I forgot my camera so no pictures. :(

I'm not sure if I've told you all lately, but Arianna speech is really taking off. She is repeating more of what I say. The other day is was "bucket water" and today it is "orange pumpkin". I got her on video....she was being shy for some reason. The part where she is screaming is her saying, "Daddy look!" I know I understand alot of what she is saying but alot of people still cannot.

Make an on-line slide show at www.OneTrueMedia.com

Upset

I am so upset so I'll have to keep this short. I recieved a call from Ariannas OT telling me the state is cutting the budget for the Arizona Early Intervention Program. They are completely doing away with the birth to 3 years program. WHAT THE HECK?!?! (I wanted to use a different word but I won't) So many children NEED that program. I know if it wasn't for AzEIP Arianna would of had a feeding tube and would not be where she is with her speech.

They are having a press conference tomorrow which I was planning on going to but not now since Arianna is sick. I will, however, be going to the "Meet Your Legislature" meeting on Saturday to voice my opinion. This is just outrageous.

I did get a call later tonight from our Early Interventionist saying their specific organization which is not apart of AzEIP is going to keep seeing children regardless until the end of their fiscal year which is June. Arianna would of been graduating from this program at 3 years old anyways but it's still upsetting because she needs all the help she can get before she turns 3 cause she will not be able to get therapy in the school system due to the germ factor. AAAAGGGHH!!!

So...I'm extremely upset and just had to tell you all how much I hate all of this.

Speech Therapy

This morning Arianna had her speech therapy. Joanie was so excited about all her progress. Of course Arianna doesn't talk as much with Joanie but she was still excited. She thinks Arianna is probably right on track with her speech, maybe just a little bit behind. She is going to bring the assessment forms next time she comes. Speaking of next time, she is cutting her speech therapy to once a month!!!! I can't believe it. The past year we have been so stressed about her speech and now she is getting her speech knocked down.

I'm actually taking Arianna to my sisters this afternoon so Robert and I can go watch a movie at the cheap theatre. I don't see how people can spend $40 at the expensive theatre. I'm so looking forward to the little break. Then we plan on heading to Wal-Mart to do some Christmas shopping since we haven't done any yet. I know....it's horrible.

Hope you all are doing well!

I did take Arianna in to see the orthopedic doctor on Tuesday. After he looked at her foot, ankle, and spine he felt confident that this (ankle pronation) is nothing to be concerned with "right now". I am completely fine with that news. I still need to go get her some better supportive shoes but I just LOVE her little Nike's so I haven't done that yet.

We had her speech therapy after our appointment and the first thing the ST asked what how often Arianna is allowed to use her paci. I told her all day long. She asked if there was any way to just limit that to bed time. To be honest with you I am ready to ditch the paci myself so that was all the motivation I needed. She said because of her speech delays the paci is really not going to help with her speech. So.....yesterday I didn't give her the paci ALL DAY and man was that a LONG day. She cried and cried but I didn't give in. Then this morning I let her have it while we laid in bed watching cartoons but as soon as it was time to leave the room I took it away from her. She cried for a second but that was about it. She did ask for it today but not as much. I just kept distracting her by playing with playdo (which is a new word she can say!) When it got closer to bed time she started getting fussy and I was walking to get her paci when I realized she had already fallen asleep in my arms. So looks like she doesn't need it to fall asleep so we might actually be completely done with the paci. That would be great! But we'll just see how she does the second we get in the car cause she always gets her paci in the car.

I do have to say after just two days without the paci she is eating better, saying more words and babbling more, and even sleeping better. You think there is a connection? I do!

So the past few days Arianna has become such a dare devil. She is trying to climb on everything, including the top of the couch. Here is what she discovered she could do last night.

Such determination in her eyes..

I haven't taken a bath picture in awhile so here one is...

You can barely even see her scar!

This afternoon my heart momma friend came over again and this time Arianna LOVED playing with the baby. "Baby" is one of her new words so she kept saying it all day. I have to tell you how nice it is to be able to hang out with another heart mom. She has been such a help with me over the past few weeks with the support group that I asked her to be my Co-Coordinator and she said YES!!! She is also putting together our website for our group and it seems to be coming together rather nicely.

Check out Arianna eye balling baby Kira's paci...

Let me have that...

Girls just hanging out watching "Yo Gabba Gabba"

Hey Isaac, what to come over and watch it with us?

I have started letting Arianna pull a chair up to the kitchen counter and help me with whatever I'm doing at the moment. She loves helping wash her cups....it's more like splashing water all of the place but she loves it. I also let her help me cook or bake...of course nothing that can hurt her. She normally does the mixing and pouring. So today I was in the kitchen and heard her drag the chair over to the counter. I turned around and she had climbed onto the chair by herself and was standing on it in the middle of the kitchen! I was so excited because I've been waiting for the day that she could get on a chair like that by herself but kind of freaked out after wards. So I pull the chair up to the counter and she starts climbing onto the chair again but this time slips and falls, but thanks to my cat like reflexes since becoming a mom I grabbed her by her arm before she hit the ground. Phew!!! I have to watch out with her now that she is climbing on everything. I've waited a long time to finally say that. :)

So here she is helping me with dinner tonight...

So now that all the nice and happy stuff is out I just have to tell you how saddened I am to hear that sweat heart buddy Colin has earned his angel wings this week. My heart just breaks when I hear of a child leaving this earth too soon. He has been loved by so many and will always be in my heart.

So I've had a very emotional week after watching a heart baby die in the hospital and finding out about Colin. It just breaks my heart that so many children have to endure so much and then loss this fight against CHD's. I am scared more today about Arianna than I have been in awhile. I have known soo many heart kids that are doing fine then all of a sudden their hearts just stop. And after the incident the other morning thinking Arianna wasn't breathing....I just feel like this is such a burden to carry every day. I have been waking up every morning since Friday just crying because I am so blessed to have another day with my daughter. I am so scared that one day I will wake up and she will not be with us. My whole world has changed since we found out about Arianna's heart and there are days that I'm happy we did and there are days that I wish I could just turn the hands of time around and never start on this road. I know am a better person today than I have ever been in my life and I owe that all to my daughter. I'm helping many families through our support group and I feel like I have a direction in life now. I may not be a scientist, a lawyer, or a doctor, I'm just a heart mom that is trying to make a difference in my local heart community.

Sorry for such a sad ending to such a wonderful post but I always feel better after posting these things on here. I just have to learn to deal with all these emotions and fears. I still find myself just trying to take it one day at a time.

I think it's time for a vacation.....maybe one day right?!?! I'm still thinking the heart mom vacation would be an awesome idea. Maybe Vegas since Kathy is already there! :)

Weekend Review

This is how Arianna's right ankle looked when I woke up Friday morning. I was freaking out!!! I thought her ankles were getting worse (ankle pronation) because I just jumped to conclusions, but Robert the wonderful dad he is decided to give her some Benadryl and the swelling went down a little. I made an appointment with the pediatrician anyways since it was Friday.

By the time we got to the pediatrian her ankle looked better but very red and warm to the touch. After a few residents looking at her and our pediatrician they thought it was an allergic reaction to a bug bite.

I didn't see a place where she was bit in the morning but I had to spend the afternoon at the hospital working for my support group. By the time I got home you could see a bubble where it looked like she was bit.

The pedi gave us antibiotics in case she got worse over the weekend. They said it could also be cellulitis so the antibiotics would be used to treat that if in fact that is what she had.

This is what her ankle looked like Friday afternoon.

Much better!

She keeps telling me she has a boo boo on her ankle and crys so I'm sure it still bother her. Thank goodness that is all it was. However, the mother I am I already scheduled an appointment for the orthopedic doctor this Thursday so I can talk to him more about her ankles. He really doesn't seem concerned with them but to both me and Robert we think the ankle pronation is gettinng a little worse...more on the right then the left. Of course in this picture you can't tell with all the swelling.

Not much else going on around here. I had a very busy week last week working on alot of things for my support group. I'm starting a visiting program for the NICU next week so it will be nice to meet some newly diagnosed heart families. Maybe nice isn't the proper word. I just get so much out of supporting other heart families.

Yesterday we went to get a group photo for our support group. It was alot of fun to be around heart families and just talk. I got to hold a couple babies which felt SO good. Arianna is the second to oldest child in our group, the oldest being 4 years old with HLHS.

Then today we went and got family photos and of course they suckered us into buying more photos then we would like. I got the cutest picture of all 3 kids and one of Arianna by herself. We won't get them till next month but I'll scan them so you can see them.

We don't have too much planned this week. I go in for my first physical therapy session tomorrow, which I'm really happy to finally be starting. I've actually had less back pain this weekend which was great. Last week I did alot of walking at the hospital but thanks to my wonderful doctor who finally prescribed me something stronger than Ibuprofen I was able to handle it. Hopefully PT will really help me out.

Then Arianna has Early Intervention and speech therapy on Tuesday which is normally just alot of playing so Arianna loves it. Speaking of speech, her speaking is really taking off. She is putting more sounds together and saying alot more words. I swear one of these days I'll get her on video.

It's 9:35 and I think I'm actually heading to bed. I've had a pretty emotional day today so I just need a good nights rest. Hope you all had a wonderful weekend. I know I need to check up on all my heart buddies...I promise to do that tomorrow.

Good night!

Yesterday we had the occupationl therapist and nutritionist over for a visit. The night before Arianna went to bed at 1am because she had a late nap, so I actually had to wake her up for this appointment and she wasn't happy. She did play with the OT, instead she just cried and sat on my lap. The nutritionist did get her measurements and she is weighing in at 21 pounds without any clothes or diaper!!! She is 81 cm in length and her head is growing well too....I can never keep up with that one.

Then we had the speech therapist come over and man was she impressed. I really need to get some video of her talking. It's just blowing us away at home much she is saying. I even bought her some of those alphabet letters for the bathtub and this morning I was holding up the letters pronouncing each one and she was saying them too. Of course, only a few but it's still amazing to me!

Then today we took her to the hospital for her follow up renal (kidney) ultrasound. For those who don't know...Arianna was born with both her kidneys (it's common for 22q kids to only have one kidney) but she had hydronephrosis of her left kidney. At our last ultrasound back in Sept. 07' this was resolved but the urologist wanted to wait and year and double check to make sure things are still looking good. The lady who did the ultrasound said everything looked good so that was reassuring. For once, I'm not worried about the test results but I'll still be picking up her results for my own records. I can't tell you how helpful our medical record book has been. She has seen so many doctors and when we see one of our specialists and they ask about a certain procedure, blood test, etc. I just whip out the ol' book and there is the answers. :) We go next month to see the urologist and hopefully that will be the last time we see him.

The rest of the week should be nice and relaxing with the exception of my doctor's appointment tomorrow. We might even have a fellow heart mom come over sometime this week to hang out. Her baby is 4 months old and also had tetralogy so it will be nice to get together and talk. I'm so curious how Arianna will do around a baby. I'll make sure to post some pictures.

Early intervention

Today was Arianna's visit from the early interventionist, Sherri. She just loves playing with Sherri and always excited about the fun things she brings over. Today Arianna got to play with playdo!!!

Arianna said 'roll' for the first time while rolling out the playdo!

Kathy, this ones for you. She was watching Yo Gabba Gabba!

Sherri let us borrow this table she had in her van. We are going to cut the chair and table legs down because they are too tall for Arianna. She already had fun sitting on it eating her lunch.

It's 5pm and Arianna is the most cranky child ever. She is still working on cutting another tooth, hasn't had a nap, and downright unhappy. I'm hoping she can make it for 2 more hours than falls asleep for the night. If she takes a nap now she'll be up till 11pm!!!