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!
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