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!