Gonna Get A Smile

My goal for today was to capture a sweet Connor smile. And yes, it was a better day than yesterday!

This morning, when Gracie woke up and had to change her baby's diaper because it was so stinky.

Here are the Connor faces I was able to get this morning. Cute, but not the big smile I'm looking for.

There was quite the excitement today when an ambulance and fire truck showed up nearby.

Connor finally gave me some sweet smiles this afternoon!!!

Bennett and Gracie helped get some cleaning done this afternoon. They are great helpers!!

Connor thought everyone's job should be entertaining him.

Brad did very well on his practice licensing exam today. He takes the real one in two weeks.

What A Day

Today was Gracie's first appointment with her new urologist. We got to the office early to fill out paperwork and realized Connor's pacifier had been lost along the maze from the parking garage. Oops! I was feeling kinda brave for tackling a specialist appointment with three kids by myself until a mom walked in with her six. Wow!

The nurse was really nice and all was going well despite Gracie's apprehension until the automatic blood pressure cuff malfunctioned and just kept getting tighter and tighter. I heard her start to whimper about the time the nurse saw the look of sheer terror on her face. She stopped the machine and Sweet Gracie had red marks all over her upper arm. After a few tears, we were all ok until it was time to try again. Little miss had no interest in anyone coming near her, much less the lady with the blood pressure cuff. After the wonderful nurse took her own blood pressure twice and I fished some fruit snacks out of the diaper bag, we were able to try again, but not without tears. 

We had time to regroup and change diapers before we saw the nurse practitioner. Bennett complained that his mouth was bothering him and we discovered his bottom 6-year molars coming in. Then, we tackled putting the kids' points stickers in their buddy bucks books to pass the time productively. It took some sweet talk and more fruit snacks for Gracie to even lay on the table for a quick exam by the sweet nurse practitioner. I was encouraged when I found out that she has done training under the urologist that we loved in Dallas. The nurse practitioner felt positive based on my history, but is waiting for a new renal ultrasound and getting all of our urology records and MRIs in before we make any decisions. She gave me some ideas about potty training, but we'll know better how to tackle that monster after some more tests. We're calling it good news for now and are looking forward to further discussing things in a few weeks. A different nurse came in with an appointment for the renal ultrasound, but it was next week at the same time as Bennett's dairy food challenge. I told her the two dates in the next month that we have dr appts scheduled and low and behold she came back with an appointment scheduled for the other day we have a dr appt already. There's enough time between that I should be able to make it work, but really?? I asked where radiology was and she proceeded to tell me that she was new and knew how to get there, but didn't know how to tell me and I should just follow the signs. 

Bennett and Gracie had both been really good, so a treat was in order. We all enjoyed slushes from sonic before continuing with some errands. 

First up, Office Depot. I had dropped off some cardstock to have bound into homeschool notebooks on Saturday. After standing in line for 15 minutes I was less than thrilled to find out that my notebooks that were supposed to be ready in two hours still hadn't been started 48 hours later. After realizing no attempt was being made to get them done quickly, we told them to cancel the order and let them know we would get it done elsewhere. I am thankful to the lady we chatted with in line who had tipped us off to the other Office Depot in town that we didn't know existed, but apparently has much better service. 

We had to make a quick, but emotional, trip to target for Bennett to replace a magic ink coloring book of Gracie's that he had colored all but one of the pages in. Then we were off to visit with Brad while he had a quick dinner before work. 

I had planned to get groceries, but when Connor started crying as soon as we parked, I decided we'd all had enough and headed home. After a nice rest for everyone, we went for a not too terribly hot walk. We ended our day with a late night dinner of fruit loops. A meal to celebrate because it was Gracie's first bowl of cereal with milk. 

(I wish you could see the milk dripping off her chin.)

We ended our day with Connor giving Gracie a great big open mouth grin. I sure hope to catch a picture of one soon!

There's always tomorrow. 

A Seat for Her Walker

Today, we installed the fold down seat on Gracie's walker. She was so excited and said over and over "If I tired"

PT Goals June 19

Stretch hips at diaper changes
Sit with legs crossed to stretch hips
Work on standing with minimal support
Knee-walking with trunk higher
Start wearing hip-helpers again
Use braces when using gait trainer

MRI and Visit With Dr. D

We were up bright at early this morning to head to Cook's in Ft. Worth for Gracie's MRI and our first visit with Dr. Donahue in 9 months. Jenn is so amazing and came with us for moral support. Our arrival time was scheduled for 7am, but we were about 20 minutes late because the fog was crazy on the way here.

The had us looked over and back to a room within 15 or so minutes. Gracie weighs 16 lb and 8 oz and is 28.5 inches long. We met the nurses and anesthesiologist and things were moving quickly.

Then we waited for an hour for them to be ready for her. The gave her gas about 9:20 and she fussed a little bit and went on to sleep. They told us the procedure would take about an hour, so we're guessing an hour and a half or so. We've wandered around the hospital for about an hour and are waiting for them to call us back to see her.

A little after 11:00, a guy in scrubs came out to the waiting room and asked for Grace's family. It was a guy we hadn't seen before, our pager hadn't gone off, and he had a kinda smug look on his face. My heart started racing as panic set it. As he led us down the hall, he said he did good, but I was still nervous. (after things calmed down, Jenn and I talked and she was thinking the same things) As we wound through a maze of hallways, we started to hear a familiar cry. When we finally made it to her room, she was coming around, but was very upset. I got to hold her and they encouraged me to go ahead and let her nurse. She nurses some but wa having a hard time staying awake. I could tell it was taking her longer to wake up than the last time.

DMSA Jan 2012

Gracie and I got up bright and early and headed to Children's Medical Center in Dallas for a DMSA test. They will be able to tell if her kidneys have any abnormalities or scarring. They calle us back and explained everything and it will be easier than I expected. We will only have to wait 1.5 hours, the test should only take about 20 minutes, and Gracie wont have to be sedated. The first part of the procedure is to start an IV to inject radioactive dye. They had trouble getting the IV started and I started to feel bad and had to leave the room. On the second try they got the IV right in and were done in no time. 9:45 We came to the cafeteria to get a bite and wait until we have to be back in radiology at 11:00.

Urodynamics January 2012

On Monday, Jan 9, I took Gracie to Dallas Children's Hospital for another Urodynamics Study. Our past two experiences at another facility have been awful. Dr. G (the new, MUCH better urologist) assured us that it would go much better this time and that was an understatement. Other than a rainy drive, it couldn't have gone better.

Once we were called back we were taken to a much less imposing room with a wonderful radiology tech. She had everything ready by the time I got Gracie's clothes off. She had a cartoon on and stickers on the x-ray machine. Gracie started drinking her juice and never even cried. The procedure was done start to finish in less than 15 minutes. When I mentioned our previous experiences and Dr. Rudy telling me that Gracie's bladder looked bad because he'd seen a lot of these things, she replied by pointing to the digital x-ray picture and saying "That's a perfectly normal looking bladder." I was overjoyed. As she was finishing up, Gracie started fussing and the tech checked and she had peed once her bladder got full. As the tech was looking over the images and I was getting Gracie dressed, she let me know that there was no reflux into Gracie's kidneys and that not only did she not leak with a full bladder, she peed forcefully enough to push out the catheter!

We won't get the final results until we see Dr. G at the beginning of February, but we're considering this great news. We have to go back for a DMSA later this month and should be able to get a very good idea of how healthy Gracie's bladder and kidneys are when we get all of the results.