Yay! She keeps proving those silly doctors wrong!

New word! New term! As you know, Dylan and her doctors like to expand our vocabulary as regularly as they can (which might be a little too regularly if you ask me) but we learned a new term from the Urologist who came in to look at her cute kidneys during the Renal Ultrasound, that new term? Neurogenic Bladder. When the doctor said it Matthew and I looked at each other, eyebrows raised and made note. Well, for your edumacation, from Wikipedia (The only TRUE source of information) - Neurogenic bladder refers to dysfunction of the urinary bladder due to disease of the central nervous system or peripheral nerves involved in the control of micturition. It's cause - Neurogenic bladder is often associated with spinal cord diseases, injuries, and neural tube defects including spina bifida. Okay - it's not new information, just a fun new term.

So we started the day bright and early... blech. We had to be up at Primary Children's by 8:15. Why? not sure... it was packed, and we didn't even get in until way after 9, but that's okay. It gives us time with each other and Dylan. It helps that surgery kids have to be healthy too, we knew everyone in the room wasn't germy. They set her up for a a CMG, to look at kidneys but when the NP came in and heard she had a couple of back to back bladder infections since her last bladder study she changed it to the VCMG which includes a video x-ray and told me to leave! Boo! Good thing dad was there! After what seemed like forever they came and got me and said she slept through nearly the entire thing. Course, when I did get in there she was LOSING HER MIND. Really. But... here's the scoop from the bladder study.

It was FABULOUS! Everything looked so good! Last time we went in in January they told us she had a very small bladder and they could only get in about (25 CC) about 2 tbsp without it leaking out and that the sides of her bladder were bumpy. Ahhh... what can happen in a 11 months. They got it to 110 CCs this time, almost four ounces! Normal 2-year old bladders hold 125 CCs. Get this, not only that but her bladder was nice and round, no bumps and when she had to go she voided her bladder all on her own. To empty! Kind of seems like a silly thing to get excited about but it's pretty darn important to us since a lot of SB kids have to be cathed regularly to empty the bladder. If the bladder doesn't empty all the way it can cause reflux to the kidneys and yucky problems. Woot woot woot!

Okay - Then a brief pause for the mind losing. When we went in to Spina Bifida clinic she was yelling her little head off but all 15 ladies behind the desk were ooo-ing and ahh-ing about her cute piggies! They said 'Look! She looks like Cindy Lou Who!!' Thus bringing on stuffed animal #2. Which I would have given back if A) I knew it was #2 or B) she didn't like it so darn much. Yes, she was quite spoiled by the Primary Children's staff today. Something I attribute directly to her adorable bows and piggies! No need to trust me, evidence below...

Dr Neuro came in to talk to us a little bit even though he wasn't on the schedule, Paula Peterson just wanted him to quickly stop in. He was very pleased will all the progress post Infantile Spasms. He did not want to repeat an EEG to see if her brain activity is normal because her clinical observations (by us) were so promising. He said an EEG is helpful but he treats children, not EEGs, and there was no need. Love it!

When we talked to Paula she mentioned using Dylan as a case study for a presentation that she was doing to the Neurology department. She said she didn't intend to use her name or personal information or anything... like we would mind! Matthew asked if she wanted pictures! Parents of kids with IS are often told that they will know within 3-5 days of treatment if the ACTH works. But I know of one other parent (through the blog actually, shout out!) that the final spasm was on the last day of the full dose. And then... Dylan of course didn't stop until a week after the ACTH treatment concluded. Parents need to know these things... please. Anything really to give them hope that these hard to treat seizures can be treated sometimes!

We spent a little time with the Dietitian there, who I really like. I think because she is better in touch with the SB kids and knows a little more about their specific challenges and what weight is acceptable and in a 'normal' range. So she likes that we are on track and just said to up Dylan's liquids about an ounce or two with every pound or so. She's underweight, but within an acceptable range for her and similar kids. She loooved the path that Dylan was on with gaining, she made a great gain in length and weight since the last time we saw her but it wasn't an alarming angle (on the chart...) one that was just right for her. Being able to grow and gain so much in light of all the getting around that she's been doing is quite impressive. Go girl! Er, grow girl!

The PT that has been following her through the clinic came in next and somehow we missed him last time. He was nothing short of astounded by Dylan. It really got me all emotional I was so proud of her, okay, so I am slightly pregnant... but really, it brought tears to my eyes! I think the last time he saw her in January she could sit up but she couldn't get to sitting herself... now look at her! He said he is getting out of the predicting the future business because he couldn't have been more wrong ! He went on to say that if last time we saw him we told him she would be doing what she is he would have told us we were high as a kite. That there was no chance... and now he's talking about creating the right environment for encouraging standing and cruising along furniture! He went off to find the Orthopedic doctor, who we missed today because we were so late... and then came back in and went back off about how amazing she is. The first time Matthew was out of the room so Matthew got to hear how impressed he was with his very own ears. I love it! I love when people count her out and she proves them wrong! His observations, in between his shock, were that her legs were tight when we tried to extend her legs to straight and recommended a stretch that we can do. Pat also recommended a stretch last time we saw her on Tuesday. We can follow up in 6 months to see if the stretches worked or if we need to invest in expensive braces that will stretch her a bit more. At least we will have 6 months of attempts at getting her loose before we jump to braces. He also said her hips and the way she carries weight through her legs and torso is incredible! If he saw hips like these in that clinic he would be out of a job. Wow, there's a lot of 'he saids' in that paragraph... but he did say quite a bit! (And you know I loved every second of it and just want to brag brag brag!)

After SB Clinic we went to lunch (yummy grilled cheese). The food there is so good... I love it. And it's funny, everyone who has spent any time there has their own recommendations and favorites!

12:45, off to the renal ultrasound. Dylan, as you can imagine, after all this hard work being cute and charming was pretty much tired of the adventure by now. They got us in pretty early, probably right at 1, it was just after lunch and the room smelled like Spanish Rice. I give Dylan maybe a 70% cooperation rating. She was crying and complaining with her eyes closed at the end. She practically passed out as soon as Matthew slipped her in the car seat. She slept the way home, through a crib placement and diaper change and all the way until about 5:45 this evening. The doctor said as long as she can void her bladder her kidneys look great. There was a note that she had small kidneys last time but he said they do it by age, and not size, and well... she's teeny. (16lbs, 3 z today!)

I think that's it. But I reserve the right to remember something else amazing and come back to update this. Basically she's amazing, incredible, awesome and awe-inspiring (if I do say so myself...) and she continues to defy all the odds and any expectations that any silly doctor ever had for her. Love it! And love that it might change the way the doctors look at other kids like her!

Duncan spent almost all day playing at Ami's and I don't think we made it out of the neighborhood without him falling asleep in the car. She said it was funny because every time she was holding him on her lap he would put his fingers through the holes in her jeans. I told her she was lucky that he wasn't putting his hand down her shirt! (Uhmmm... yea...)

Cutest little girl in the world! Especially because it was at 7:00 this morning! My little Cindy Lou Who!


Cute face!