Early Years, Fun Stuff, Medication / Medical Aides

Everybody Look Out… She’s Walking!

She's Walking

Oh no, the day has come that she’s officially walking! Since she’s been able to roll and crawl we’ve known that the day she started walking was going to be trouble. Unless the mesmerizing t.v. is on she is constantly moving, dancing and getting into trouble and now we’re really in for it. It’s so cute to see her take those uncertain, shaky steps and usually when she falls she just pushes herself right back up and is on her way again. Though it’s sad to know that my little baby isn’t a baby anymore (toddlerhood here we come) we couldn’t be more proud of her!

We just received the results of her latest blood test and things are looking really good. Her electrolytes are right in the desired range and our Nephrologist is really pleased with the results! To give you an idea of her progress check out the chart below:

Electrolyte Before Diagnosis Today Normal Range
Sodium 134 mmol/L 140 mmol/L 135-145 mmol/L
Potassium 2.8 mmol/L 3.5 mmol/L 3.5-5.5 mmol/L
Calcium 2.54 mmol/L 2.50 mmol/L 2.17-2.45 mmol/L
Phosphate 0.93 mmol/L 1.46 mmol/L 1.23-2.10 mmol/L

On the Cystagon front things have been going alright, but I’m not super pleased with the side effects. Her appetite has definitely gone down and it’s hard to get much solid food into her at all right now, and her formula intake has decreased a bit but she’s still drinking a good amount so we’re happy about that. She’s still been vomiting a bit as well. We upped her dose last Friday to 50mg per 2ml of water and she’s almost thrown up every day since then. I think we’re still in that trial and error phase where we will need to learn which supplements can be given around the same time as Cystagon and which ones need to be avoided. As well as the time of day that’s best for her, whether it be right after eating or if she needs a little time after. We did try mixing it with chocolate milk for a few days and she seemed to like that even less so we’re back to mixing it with just water and have now been 2 days without vomiting, hooray! And on the plus side once she gets it out of her she’s much happier and ready to go and play like nothing ever happened, such a little trooper.

Just one last note, Dave and I have felt very blessed that we live in Canada and don’t need to pay for any of Elsie’s doctors visits and tests, and that there are a ton of programs out there to help with the enormous cost of her medications and supplements. However not everyone is as fortunate as us. There’s a family in the US whose little 15 month old boy has also just been diagnosed with Cystinosis after a lengthy hospital stay and are now having to deal with the realities of this financial burden. A friend of theirs has set up this amazing site to help lighten their load and support them. Every little bit will help so if you have the time please check out their story: Help for Carter.

1 thought on “Everybody Look Out… She’s Walking!”

  1. Hello, this is Carter’s mommy, Tory. Thank you for mentioning him in your blog. Our stories are so similar, finally a family and mother to relate to! We are so grateful for all the support!


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