Friday, August 5, 2011

Another Month Gone By...

...and what a busy month it's been!

Since surgery, Sadie has started walking like crazy!  Before, she was taking 8-10 steps before crashing.  Now, she's walking all over the place, climbing stairs, and trying desparately to run.  Her appetite, though never bad to begin with, has definitely improved, and she's also taking bigger fluid volumes which has always been a concern for us.

We've also had three appointments at Riley.  We had a routine follow-up with Dr. R, her urologist.  Sadie has routine ultrasounds of her kidneys and bladder before each appointment.  Her ultrasound showed mild hydronephrosis (fluid on the kidneys) which is unchanged in the last six months.  It's a good sign that the fluid hasn't increased, but it's not great to have the fluid there to begin with.  So, in January she'll have a cystoscopy.  She'll be put under general anesthesia and Dr. R will take pictures of her bladder from the inside.  He wants to make sure she's still emptying her bladder completely--if not, this can cause urine to reflux back into her kidneys and lead to hydronephrosis.  He'll also make sure that structurally things still look okay.  All tests up to this point have been normal, and we're praying that this will be no different.  Obviously, this is not of critical concern since Dr. R didn't feel it needed to be evaluated for six months, and he continues to say that he's, "very pleased."  Many, many girls born with persistent cloaca are not able to void their bladders normally, and they often have a vesicostomy or mitrofanoff.  We are fortunately not at that point right now.

The same week, we had surgery follow-up with Dr. S.  He feels that Sadie is recovering nicely, and she won't need to go back for 3 months for follow-up!

One of my favorite appointments is with Developmental Pediatrics, and Sadie was also seen by Dr. K who is new to us.  Her old developmental doc moved away in January.  We really loved Dr. K, and she spent lots of time with us.  She was very impressed with Sadie's speech skills!  She is interested in determining the cause of Sadie's low muscle tone and whether it's just an issue of prematurity or if there's another cause.  She's planning on reviewing all of Sadie's records to see what tests have and haven't been done, and then she'll determine whether further evaluation needs to be done.  She's also arranging a feeding study in September, since we're still struggling with advancing textures and getting Sadie to take enough fluid from a cup vs. a bottle.  (We haven't weaned Sadie because she can't take enough fluid volume from a cup--she can only tolerate a few sips.  We stared a sippy at 6 months and have done everything we can to get the bottle away from her, but she just can't hack it.)  She may have some residual problems from tracheomalacia which was caused by prematurity and led to the need for her to be tube-fed for many weeks.

Last Friday Sadie spiked a temperature of 101.5.  My first fear was that she had developed a urinary tract infection.  Dr. R's nurse told me just to keep an eye on her.  The next day her fever broke and she developed a head-to-toe rash.  She had roseola--thank goodness that's over!

Summer is winding down, and Elena has only one week of summer vacation left.  Her depression is only minimized by the prospect of getting a new wardrobe of clothes!  With 4H, church camp, and all her other summer activities behind her, we're now gearing up for the eighth grade trip to Washington, D.C. in October. 

We are so thankful that everyone in our house is happy and healthy right now, and we're looking forward to a wonderful fall!