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!

Last week through pictures

Robert's close family friends from Ohio came down for Thanksgiving. Kathy was able to come and see Arianna for the very 1st time! Thank you Kathy for coming over.

Kathy, Arianna, and Nana Sarah

Cici (cousin) and Arianna out at the airfield watching their Daddy's fly.

My Grandma Betty from Oklahoma made this hooded towel for Arianna. Isn't it beautiful?!?!
Arianna decorating the Christmas tree. She only broke 2 bulbs. :)
On Wednesday the Grandma's and grandkids got together to bake Christmas cookies.

Ari baking with Aunt Lissa

Ari and Mommy

Nana baking with the great-grandkids

Ari with her Grams

Then on Thursday we went to Zoo Lights, which is basically the zoo all light up with Christmas lights, some jazz band was playing, and cookies and hot cocoa was served. It was our first time going and Arianna had a blast!

Arianna and her cousin Bryce

Mi familia...
Mommy, Daddy & Arianna

She liked the stroller for about 5 minutes then walked the rest of the way.

Arianna sitting on a pretend elephant.

Then......we saw SANTA!!! This is her very 1st picture with Santa. We can't go to the mall or anything like that so I figured she would be 5 years old before she got to meet Santa. I literally cried.... (I had to scan the polaroid cause none of us got the pic with our digital cameras)


Grams with all her kids

So we had a wonderful week full of friends and family. Tomorrow we start off with Arianna getting her RSV shots. :( I really hate her getting 2 shots a month for 5 months but it's what we have to do.

Then on Tuesday we have ST (speech therapy). I'm sure her ST will be very impressed with all her talking. I know we all are. She is talking in sentences more. She can now say "Thank you" and its the cutes thing. After everything I do it...."Thank you Mommy."

I should also get my final results tomorrow and I'm SO nervous. I really hope I passed. If I didn't I probably won't be jumping on here tomorrow....but if I did then you better believe I'll be posting. :)

I know I've been slacking alot in blog world lately. There are a few of you I need to check on and I will do that this week. I hope you all are doing well. It took alot just for me to get these pictures downloaded and posted. Hope you enjoy!

The early interventionist came over today and we went to the little park by our house. Of course I forgot the camera but she had a blast like always. At the end of our visit I asked if we could take December off and she said yes. Have to admit it's great to know Arianna is doing so well we can take a whole month off from seeing her. :) She'll call me after Christmas to schedule a visit in January.

The only therapy we will have in December will be her speech therapy. We don't see her ST until December 9th and that will be an entire month without therapy, due to our therapists schedule, so she will be pleasantly surprised to hear all the new words.

As for myself...we'll I'm studying away trying to get prepared for my final on Friday. I'm a complete wreck about it at the moment. The hardest part is waiting 2 weeks for my results. At least that gives me time to clean my office. For those that have seen it know it really needs to be done.

Nothing but good stuff in this post :)

Helping mama clean.

She loves helping me in the kitchen.

This was the only way I could get her to eat for 2 days.


Too cute!

As you can see she is doing just fine. Her runny nose stopped the following day. However, I woke up with a little head cold probably just due to the weather change. Can you believe I actually pulled my jacket out last night.

Tomorrow I take Arianna in for her first round of Synagis. I know she won't be happy about that but it's for the best.

I almost forgot to tell you all....this weekend Arianna's talking has really taken off. I keep a list of words she can say for the speech therapist and I just added all her new words in it tonight and she can say.....65 words!!!! She can say seven 2-word sentences and one 3-word sentence, which is "help me up" (when she wants to help me cook). I really think keeping this word list for Arianna has really helped me out. I'm starting to work on putting the words I know she can say into sentences and have her practice saying them. I'm also starting to teach her more signs again because I've really backed away from it lately. It's amazing in one afternoon she picked up 4 new signs. This kid is amazing! She is really into saying different letters so we are working on saying and signing letters with her right now. She's also doing really good with her colors. It just amazes me how much she picks up.

And one last thing....Arianna went potty in her toilet today!!! I haven't pushed potty training because she's been working on her speech more lately. Well the past few days shes been telling me when that she needs to go potty...yes she can say "poye" so we go sit on the potty. I walk away for a minutes cause she likes her privacy...isn't it funny already and she needs privacy...and she runs up clapping and saying "yeah". She is growing up so fast. *sigh*

Speech Therapy

These are just some pictures from todays speech therapy. Arianna LOVED the jack-o-laterns. She carried ALL of them around with her the entire time. Pretty funny. The ST was really happy with her progress. She says Arianna is falling in the 18-21 month range with her speech.

Then she had some cake!

Paci came out...

We had a family party to go to last night and it's out of town. Not that bad of a drive about 45 minutes to an hour drive. Arianna did SO well without her paci until the last 10 minutes she was just crying and crying so I gave in. She fell asleep right away so that was nice. Then on the drive home I gave it to her to stay asleep. But first thing this morning I took it away and I think we'll just try to keep the paci for night time. At first I thought I would try to get rid of it completely but if she needs her paci at night....well then she gets it!

I can't tell you how much her speech is improving. She said "body" today for the first time, and also "right there". I just love here her sweet voice.

She is also really into bugs right now its the cutest thing. I was a total tomboy when I was little...into bugs, rocks, anything outdoors. Who knows...maybe she's just like her mama.

Today we are heading over to my sisters to watch the Dallas game. Go COWBOYS!!!

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! :)

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.

Bike ride!

Check out my baby girl on her bike! This was her first bike ride and she seemed to like it. We were only able to make it to the mail box and back home...as you can see it's right across the street so it wasn't that far.

I also have to tell you the new words Arianna can say: arm, knee, and eat! Today was the first time she said 'eat' and I was SO shocked. I was asking her if she was hungry then signed 'eat' at the same time I said it...and she signed & said it back to me! I started a list of words she can say and we are up to 26 words but only 18 words that someone besides myself could understand. I'm so proud of my baby girl! It's been a slow road with her speech but I know she will talk when she is ready.

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!