Wednesday, July 25, 2012

So whats going on with Stella right now? She is almost 6 months old! She is rolling around, starting (a little bit) of solids, grabbing at objects and blabbering and learning her voice. We took her swimming with the boys and she LOVED it!! She is just into size 2 diapers and her 6 month clothing. I think I am in a bit of denial about her getting bigger and haven't gotten rid of her newborn clothes yet!

Medically, she's doing pretty good right now. In the beginning of the month we found out she had a UTI and some reflux into her of her kidneys. Her Urologist suggested upping her caths to 3x a day. After she finished a course of antibiotics, she started a daily low dose antibiotic. She was having a 'Urodynamics' test done when they found the UTI and couldn't finish the test. It's a test to see how her bladder functions, and it is rescheduled for the 31st of August. Her renal ultrasound showed the reflux. Going from 1 cath a day to 3 is not too much of a change. It's just another added part of her daily SB care. The whole process takes about 15 minutes. After her next test we will know more about her bladder but from what we know right now she does not empty it completely. She can void on her own but there is some residual urine left. Cathing removes that excess urine. If that urine was left it would reflux back into one of her kidneys, causing a higher risk of developing a UTI. Eventually I will not be talking about ALL her medical complexicites :)

We are still on "The Great Shunt Watch!" She had an MRI and we had the same conversation we've been having since she was born. The MRI pictures show that her ventricles are enlarged but she is tolerating the pressure. Her neurosurgeon thinks maybe some kids handle the pressure more then others. Signs of not handling the pressure would be lethargy, vomiting, extreme fussiness, and "sunsetting eyes" where she wouldn't be able to look up. Stella has another MRI on August 22 where we meet with a new surgeon. Her other one is on paternity leave. I asked about what if there was brain damage being done that we didn't know about. He said there is just not enough data to show that enlarged ventricles cause brain damage. He sees kids in the clinic with SB and no shunt who are progressing well. Stella is thriving and amazing us so I am trying not to worry. She has a slight gross motor delay (which is most likely contributed to her S1/L5 spinal defect). From what we know she has no feeling in her feet but I have seen her toes move and ankles flex. When I fill out her assessments she scores very high on the communication section and her fine motor skills are great!

Her other big appointment in August is with Children's PT and Neurodevelopmental Pediactricain. I am hoping we start talking about getting her started with orthodics. She cannot bear weight with how her feet flex up so getting her a pair of braces will help her . I can stretch her feet all day but I think having braces on her feet will help her. The PT may want to wait until shes a little older but I am interested in hearing what they have to say. Stellas Occupational Therapist thinks it would be good for her. By the way we LOVE her therapist and shes only here for a few more sessions. Hoping we like the new one too!

Her Neurodevelopmental Ped is an awesome doctor! He is the go to guy for all our questions. Thankfully we have not seen any issues with her 'Chiari Malformtion' or 'partial agenesis of the Corpus Callosum'. Those are those brain abnormalities that may never cause an issue but we are always thinking about them.

I know after reading all that information it sounds so scary! But really, all that is just second to how amazing Stella is. She's just a baby. She's a little sister who laughs at her brothers and loves to cuddle and play and eat!! We are sooo lucky she is in our lives.

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