Moving forward.....

Dr. Chiang is great! He has a plan. He has goals. We are taking steps to reach these goals. With our prior doctors I was always anxious and dreaded going. It was always more of the same. Now, I am excited. I look forward to finding out what we are going to do next. Today, I was not disappointed. We had an appointment at 9:45 this morning. In the 3 months since we saw him last, he has been trying to find a way to temporarily close her vesicostomy (belly hole) so she can try to empty her bladder on her own. He found cases where they used a "tummy button," which is a plug, held in place with a water filled balloon. They are usually used for feeding tubes. He said that this was the next step, so we can see how she does with emptying. He had patients in the clinic until 12, but he said if we could hang around and meet him back at the office at 1, he could go get the button at the hospital and we could get it started today! Of course we could stay! Finally, after 3 years with this hole, we have a way to test hailey's emptying! I was so excited. This is a huge step. This will give us a lot of information so we can decide where to go from here once we see how she does with this.

So we went to see Hailey's therapist because we had to pick up something and then we had lunch. By the time we were done with that, it was time to meet Dr. Chiang. Hailey was amazing. It was not painful. She laid there and let him do what he needed to do, It looks like a plug. It has a the balloon to be filled after you put it in. I can also connect a catheter to it to drain it what necessary. Hailey has been wearing 2 diapers for years because of this hole, but today we only had one. It was leaking a little, but I think I have to have Hailey try to go frequently. She has also not felt like she needed to pee in 3 years, so this will take some getting used to. For the first couple of weeks I am going to take it out every night. We want Hailey to get used to this huge change and make sure we keep the chance of reflux down as much as possible. We go back to see the Dr. in a couple weeks to report how everything is going.

We are going to be on the lookout for signs of infection (as always!) and we are going to see how much comes out. I will also be catheterizing 3 times a day (after she pees to see if anything is still in there. In a couple months, Hailey is going to have a VCUG to check for reflux (the last one showed grade 3 reflux). We are continuing the daily exercises and nerve stim with the physical therapist.

This is such a huge step in a positive direction for her. Dr. Chiang is great. He is taking this step by step, never promising to "fix her," but going above and beyond to use every resource at his disposal to give her the best quality of life possible. I couldn't ask for anything more.

On another note, Miss Hailey is a chatterbox!!!! For so long she was silent, taking everything in. And now I am seeing all of that knowledge spilling out! She looked at my arm the other day and said "bruise," because she saw one. It was clear as a bell! I didn't know she knew that word! Today I was talking to her about a disney princess and she said "princess" totally clear and she has never said that before. She is eager to speak to anyone that will listen. A couple weeks ago she talked to the pharmacist for the first time. He knows our family very well. He was very excited to talk to Hailey! When she plays tea party with her fake food she names everything as she picks it up. She looks at books and picks a word and says all the letters. It is so awesome to hear her talking so much. She is confident in her speaking abilities and is no longer fearful. We are sooooo proud of her!

Mr. Ryan is 9 months old. He is cruising all around the furniture. Out of the blue he will let go and stand independently for several seconds. He babbles all day. He is starting to enjoy finger foods. Besides cheerios and cereal puffs, he likes, bananas, turkey, carrots, bean and bacon soup, and more! He has recently decided he loves to drink his water and started drinking out of a sippy with a straw. He gets into EVERYTHING and he knows when he is going to do something or get into something he shouldn't. he looks at me and smiles and goes for whatever it is! Little stinker! Tonight he discovered my ticklish feet. Now he thinks it is hilarious to tickle them! I prop my leg on the side of the tub when I bathe Hailey to keep Ryan from falling in. He grabbed my foot and it tickled and he kept doing it. He surpised me and I wound up with my jean covered lower leg in the bathwater!

Never a dull moment!

Little Ryan is a big boy!

Ryan is 7 1/2 months old. He is a very happy boy, mellow and easy-going. He adores his big sister, and the feeling is mutual. He grabs my face and smashes his wide open drooly mouth against mine when I ask, "Where are my kisses?" He also will snuggle into your neck and wrap his arms around you if you ask for hugs. He is fearless and it makes me crazy sometimes. He started crawling a few weeks ago and is pulling to stand every chance he gets. This is all so new to me as baby Hailey was very different. But it is so cool to watch him.

He eats baby food now, but cereals do not agree with his tummy. He is off the charts for weight and in the 95%ile for height. Ryan babbles all day long. His favorite thing to say is da da da da..... He has found all the cars in our house and he rolls them back and forth. He also loves balls and to knock over blocks and stacking cups.

Ryan just goes with the flow. He sits patiently in the cart when we shop. He smiles at everyone and gets squishy and shy when they talk to him. He is so good on all our trips to San Diego, both in the car and in the doctor's office.

Hailey watches out for him. As soon as she hears him on the monitor, she lets me know.If I am trying to finish something she won't wait for me, but goes to keep him company until I get him out of bed. She always gets toys out for him and makes him laugh in the car. She has to give him a hug and kiss before going to sleep. She initiated that on her own.

I am so blessed to have such wonderful children. Staying home is exhausting and my to do list just keeps on growing. But I wouldn't have it any other way. I have been asked about when I will return to teaching. I don't know. There aren't any jobs anyway. But what about my dream of teaching? People forget that an even bigger dream for me was to be a stay at home mom. I have my good days and bad days, but I am exactly where I want to be.

Good days for Hailey

Hailey has been seeing a physical therapist in San Diego since July. Her urologist sent us there to try biofeedback, where she helps train Hailey's pelvic floor muscles to release her urine the way it is supposed to. Three weeks ago, we saw the urologist and Hailey's awesome therapist came for the appt so we could all talk and figure things out together. Dr. Chiang's next idea was to try to temporarily close off the vesicostomy and fill her bladder. Then we would have her pee and see how well she emptied. We tried this using a catheter with a balloon to block it. Our first attempt didn't go very well. A lot of the water put in leaked out and Hailey couldn't pee with us all there. The plan was to try again with the therapist since she has an ultrasound machine and we can see if she emptied. The goal is to train Hailey's muscles to release the urine without her really pushing and straining to go. If she pushes and the bladder muscles don't relax and release the urine, then it will go back up into the kidneys.

We met with Hailey's therapist 2 weeks ago to try again. We took great care to minimize the number of times Hailey contracted her bladder muscles with the catheter in, so we reduced the leakage. We also put in less water. After we sat her on the potty, it only took a couple of minutes for her to pee. We did the ultrasound before and you could see how full she was. After she went, her bladder did shrink down and the therapist said it looked empty.

We went again a couple days ago and she did well. So we are going to be practicing this at home and again with her therapist in a couple of weeks. Her urologist wants to see if she can be success at emptying and then he wants to check for reflux again. We will be seeing him again at the end of next month.

This is all very encouraging. Hailey is such a trooper and I am so proud of her. I am very hopeful that we are going to figure out a long term plan with this doctor. We still don't know what that looks like yet. But he is staying on top of everything and is in frequent e-mail contact with Hailey's therapist. I love them both for how much they want to help our daughter!

It has been waaaaay too long!

So much has happened since my last post. Our family has grown, we have moved, Hailey is 5 and a big Kindergartener, and we are driving to San Diego to see doctors now! I am not going to totally back track, but go from here. Little Ryan will be seven months old on Sept. 28th. I can't believe so much time has passed since he was born. He is such a go with the flow kid. Our Ry Ry is very healthy and strong. He has recently started crawling and says da da all day long!Our big sister Hailey loves her brother sooo much. She has changed a lot since her brother was born. She is becoming much more independent and is blowing me away every day with all the words she is saying. Right now her favorite thing to say is "help Hailey" Today she said "help Hailey cut," a 3 word phrase without being prompted through it. She is doing sooo great! She eats almost everything now.

Hailey loves her new class. Her teacher said in a note home that she was excited about what Hailey already knows. She is no longer afraid to talk to others. She is coming out of her shell.

I am sooo tired and should be sleeping, so I will end this here. Til next time!

Dr. visits, park and more!

We went to the ophthamologist a few weeks back. We are supposed to go every 3 months so he can monitor Hailey's eyes and look for changes. I was shocked to find we had not been back in a year! But then I remembered that I had scheduled appts, but kept cancelling them because of infections and things of that nature. The doctor was very understanding, as he always tells us to take care of the other stuff, her eye issue is just cosmetic at this point. I am still trying to get up the courage to take Hailey to the dentist- she has never been! But even her pediatrician had told us to wait and deal with the big stuff. I know now that it is time.

Hailey has been a little afraid of dogs in the past but now it is really bad! She screams and tries to climb up my body to get as far away as she can! Little dogs, big dogs, does not matter! She is starting to fear cats too! Don't know where this is coming from. She has been afraid of my mom's dog but she used to be okay around other dogs. hmmmmm...... Went to a party for a friend's daughter at the park. OOPS! It is also a dog park! Oh No! She was stuck to me like glue the whole time we were there! She did love the swings though! :-)

I went to a meeting at Hailey's school, to review her goals for the year, check her progress and make new goals if necessary. Hailey, my amazing girl, met or exceeded ALL 18 of her goals for this year! WOO HOO! We are so proud of her! We are starting with all new goals. It was a quick meeting and it was spent with a room full of teachers and therapists telling me how wonderful our daughter was and about how much progress she has made! Wonderful afternoon!

A day after the meeting, I was reminded of a concern I was having. There are a couple of kids in Hailey's class that she is really weary of. They are rough and loud and like to grab her and touch her. A big fear of Hailey's is a fear of losing her balance and she gets very upset if she feels someone around her could cause her to fall. Hailey greatly values her personal space and they invade that. That particualr day, Hailey was sitting in the double stroller with another child (they have so many kids and not enough adults that they put a couple in the stroller to walk down where the parents/ buses pick up) and he was trying to move her backpack that the teacher put as a barrier so he could get to Hailey. The look on her face broke my heart and I have seen that look before, when the children she fears come near. I called the school that day and talked to the psychologist. She put me off for a week after trying to talk me out of moving her. I had learned that the pm class was very different- the other kids were calmer, not in your face and quieter. I called the psychologist back and she once again tried to change my mind, but I held firm and she honored my request. Hailey started on Monday and here it is Wednesday night and I have NO regrets! Hailey is happy with her new classmates. Same teacher and therapists, so it wasn't a huge frightening transition. She made a friend on the first day and did not shed a tear when her new friend sat next to her and they played with dolls!

I had a fight on my hands with the insurance company as well. They refused to pay for a refill of Hailey's meds because they said I reached the quota for that med for the year! That is what is keeping her infection free!!! After 3 days with no meds, and phone calls to pharmacy, doctor and insurance co, they approved it. Next day Hailey started acting sick. Back to the doctor where they said it looked like infection. It could be infection, or it could be elevated bacteria because an infecton was on the horizon. We treated it and waited for the culture, which came back negative.

Hailey and I went to Irvine Regional Park last week. We took a stroll through the zoo and saw bald eagles, black bear, chickens, rabbits and more! We also fed the ducks some bread (used to do that with my dad as a kid! Fun Memories!) We spent quite a bit of time on the swings and Hailey loved the fact that Mommy could swing next to her! We ended our outing with a picnic lunch- I love the fact that I can make Hailey peanut butter and jelly sandwiches!

I have been preparing for Hailey's 4th birthday and have been doing things with pictures and I am just so amazed by all of her progress! My daughter is almost 36 lbs and is 38 and 3/4 inches tall! She has muscle and is trying to step up the curb without any assistance. She is trying to repeat EVERYTHING we ask her too! She can spell her name and my name with foam letters without any help. She can recongnize many letters and give them to you if you ask for them-h-a-i-l-e-y-s-c-o!

Hailey is such a joy!

Trying new things

Hailey is becoming Miss Adventurous! New places and activities are not as scary as they once were. I took Hailey miniature golfing a couple of months ago and she LOVED it! Hailey loves anything that has to do with a ball, so I was pretty sure she would like it. I showed her what to do once and she was sold. Most of the time, I was holding the club with her and helping her swing, but she did swing and hit the ball a few times on her own too!

We also went to our first Chuck E. Cheese party. I even took her on a trial run, so she could get an idea of what it was like. A weekday in the afternoon is certainly not the same as a Saturday, but it sure is loud in there even without a bunch of people! She played a couple of games, but many scared her off just by being noisy! She settled on skeeball and we played a few games of that. After ten minutes on our trial run, she signed "all done" So that was the end of that! The day of the real party, she went straight to skeeball and only stopped briefly to eat. We stayed and hour before she signed "all done!" No tears or meltdowns. I was so proud of her!

Over spring break, I took her to this wonderful place called Pretend City in Irvine. I highly recommend it to anyone with young kids. The name tells exactly what it is! Hailey had a blast, working as a cashier at Ralphs, picking apples and putting them in her basket, digging in the garden, rubbing sand between her hands at the beach (yes, my daughter touching sand and enjoying it!), sleeping in the grown up bed, answering emergency phone calls, crawling through a tunnel and more! We stayed for 2 1/2 hours! I could not believe she lasted that long! We brought her best buddy Claire from church along with us!

Hailey continues to amaze me every day. She is making such great strides! You cannot rush her into doing anything. She does things when she is ready. But when she is ready, watch out! She takes off with turbo speed!!!! We recently got a Winnie the Pooh play "computer" (very inexpensive at Target) and because we have been working so much on her name in the bathtub, Hailey can press all the letters in her name as we ask her for each letter without us showing her what they are! And in the bathtub, she finds the letters for her name amongst all the letters without help! If the bath tub is what we need in order to work with Hailey on speech and letters, let her stay in the bath all day long! :-)

Hailey has become much more open to new people and has realized that now that she can walk, she can go go go! We were visiting our friend Bev today at the Rehab hospital and she just kept walking out of the room and wandering down the hall with her mommy trailing behind her! She would peek into the other rooms and the best part was the people's faces lit up when they saw her! Some asked her to come in and say hi and she would smile and run away! That's Hailey for you, leaving smile on the faces of everyone she sees! She even let the nurse pick her up and was playing peek a boo with the nurses outside Bev's door.

We love Hailey so much and can't wait to see what she is going to do next! Til next time!

road trip!

We have our new appointments with the urologist. I guess it didn't work out to have them on the same day.:( Two long drives and 2 missed school days. But we have to do whatever it takes. Hailey will have her renal isotope scan on January 18 and a appointment with the urologist on January 26th. We will see what happens! Hailey's hair vs Car seat-car seat won!

In other news, Hailey and I took a road trip last week. I think it was Tuesday morning that I made the decision that I wanted to go and we left Friday. I had know for a while that my cousin Allison would be visiting my Aunt and Uncle and grandma in Arizona and I wanted to see her. I think it has been over 10 years since I have seen her! So, Hailey, my sister Dani and I headed out on Friday after Dani was done babysitting. We left at 12:40. At around 4 pm we had come to a stop and there were signs that there was an accident up ahead. After an hour and a half of stop and crawl traffic, we were guided off the freeway at the CA/AZ border. The 10 was shut done and we were led on an hour and a half detour in the middle of pitch black Arizona. Kinda nerve wracking, but it was so wonderful when we finally saw a gas station and the 10 again! It was 9:30 when we finally got there!

Hailey loved Allison from the start!

We stayed with my Grandma and visited my Aunt and Uncle both days. We also saw other family- Hank, Donnas, Karen and Kayla. Hailey had such a great time. It was as if no time had passed since she had seen my grandma or Aunt Marlene. And she went straight to Allison and gave her a hug the first time she saw her. Hailey was a little sleep deprived, but she was just having such a wonderful time with Aunt Marlene and Allison that it was hard to leave and go back to Grandma's.

Best Pals!!!

Hailey did great in the car, and I think it was mostly due to the fact that Dani was with us. We came home Monday and has a nice uneventful drive home.Greg couldn't come because he had to take a class on Saturday, plus he had to work. It was nice to get away for a little bit.