A few steps backwards...

Just a small post to update really.
We had to take the Little Princess to hospital the other day. After a few days of being sick on literally everything she ate or drank her Dr told us to bring her in. So off we trundled. They weighed her, took her BP and took more blood. Everything came back fine. I wasn't pleased she had lost weight again, she's meant to be gaining now not losing. They didn't need to change any of her meds or give her anything else so after 3 hours of waiting around we where sent home and just told to let her drink plenty of water which we do anyway as it's the only thing she will drink.
I sat at home, wondering why she was being sick again all of a sudden after weeks of doing so well. Was it the rice pudding we tried? Was it the cows milk? It couldn't be the yogurts as she was never sick on them in the 1st place and she'd happily eat a million a day if she could.
Then it hit me. At her last appointment they had given her Sytron again, before she had Sodium Chloride (not sure if the dr wrote it on the prescription by accident or not) and it never bothered her. It wasn't until I noticed she was back on the Sytron that she had started to be sick again. I mentioned this to her Dad. He didnt think it was that, he thought it was the rice pudding that had given her a dodgy tummy or her Cystagon. I suggested we stop using the Sytron for a day to see how it went and low and behold she wasn't sick! She has been off it for 2 days now and today she hasn't been sick at all! When we go back to see her specialist I'll have to let them know and see if there is anything else she can have instead to replace it that wont make her sick. She's at the hospital this week so we can talk to the surgeon about the operation to have the button sorted for her tummy and an acid reflux thing that should help her when she is poorly to not be sick, the slightest cough makes her throw up!
I'm hoping we wont have to wait months for the operation date, Ive spoken to a few parents who have said their child has thrived after having the button inserted into the tummy and it really would do Princess some good. She's just a bag of bones lately and its heartbreaking. Seems some weeks she does fab and then others its back to square one. Its going to be a very long, uphill battle is this but I know she can do it. She's one brave, strong, amazing little girl and has coped so well. Better than me at times haha.
She's a super star ^_^

Some Good News!

Well E had her Renal appointment on Tuesday. We weren't expecting much to be honest, just to make sure blood levels where still ok and that her meds where working and that they didn't need adjusting.
They weighed her ... 18lb 10oz! A whole 1lb gain in just 2 weeks!! I couldn't believe it. I think letting her have her yogurts again might be helping that, she loves yogurt. Then they measured her ... 74cms! She had grown 2cms in a fortnight. Someone had stuck her in a grow bag for sure.
Mummy & Daddy where VERY pleased. Dietitian was happy and Dr was happy. Everyone was happy! Even E who usually gets so restless and clingy at these appointments was quite happily playing on the floor and crawling around and smiling. Someone surely had switched my daughter heehee. We missed the call from the Speech Therapist unfortunately so called her back today to arrange an appointment, I'm really hoping it does help with her eating more solid food as she really wants to. She steals it off your plate now lol.
The Dr doesn't want her back for another 4 weeks, which I was surprised at but she was really pleased with E's progress and said unless the bloods she had taken come back with low levels of something she doesn't really need to see her :) By the time she goes back she'll be a big sister & I'll be a mummy to 2 beautiful Princesses!
She's back at hospital though May 26th to see a different Dr about having the Mickey Button in her tummy rather than the nasal tube, have heard it makes a huge difference and alot easier to manage so will be loads better as her nasal tube keeps coming out what with all the cough/colds she gets bless her. Community Nurses are fab though and usually turn up in 2/3 hrs to put her in a new one, which she absolutely hates but I always give her MILLIONS of hugs & kisses afterwards and sometimes she falls asleep on me.
She's been through so much in the past 9ish months and she's so brave. I'm so proud she's my daughter! Glad she is finally gaining some weight after losing so much, she'll be my Little Chunky Monkey again in no time if she carries on gaining 1lb every fortnight :p Here's a recent piccie of her without her tube and with a cheeky look on her face as usual lol.