Chloe had her latest lot Blood Tests done on Monday, I’ve been wanting to do another blog post but thought I would wait until I got the call from the Paediatrician. Well they must of been pretty pleased with the results as we didn’t get the call until last night.
So her WBC count was 16.7, which is exactly the same as last month and her Platelet level was 221. Because of this fantastic result and everything seems to be staying in the safe normal range Chloe doesn’t need another blood test for another 2 months . . . YAY!!!!!!!!!!!!!!!!! So unbelievable happy with that. We still have appointments up at the hospital before then and I have a feeling that there still may be blood tests involved but at least on the JMML front things are pretty good.
We’ve finally heard about when we are seeing the Genetics team from Wellington and the date for that is 28th August. It will be interesting to see what they have to say. I’m aware that they may not want to do any Genetic testing on Chloe and we may just have to settle with a Clinical diagnosis, but at least we should get some kind of questions answered and options for the future.
Chloe’s Dietician has given us another fat supplement to try called Calogen. This one is alot easier for Chloe to take as it’s more of a liquid than a gluey paste of the Duocal. I’m easing Chloe into having it, cause what I’ve learnt about my darling daughter is that she will only accept new things on her own terms, otherwise she is prone to not feeding properly at all. So far I’ve only been giving her half of what they have said to give her and so far she is coping well by not vomiting it up but I have noticed that isn’t drinking as much . . . only slightly. The thing is, it’s hard to tell if it because of the supplement or her sore gums.
Oh boy teething has ramped up big time this week, which has resulted in even less sleep. Couple of weeks ago we did the big transition from bassinet to cot, and since then Chloe has decided to wake more. So along with teething and having a sore throat she hasn’t been sleeping very well at all. I know eventually she will fall back into a good sleeping pattern again . . . I’m waiting for that day eagerly.
We had our for first visit from PAFT (Parents As First Teachers) this week as well. It’s such a awesome programme to help parents understand their childs development and how to help your child reach their full potential. From what I understand it’s pretty hard to get accepted into the programme and considering I contacted them before Chloe was even born, I’m just greatful that we have now been given this opportunity. I’ve started to notice that Chloe is slipping behind with her development, mainly with the physical skills but as our PAFT educator reminded me, Chloe is small (with a heavy head) so she might just take a bit longer but she will catch up with her peers.
When I’m sleep deprived, I tend to be tearful at the drop of a hat. My brain gets more imaginative with problems that I know will probably never happen . . . crazy how the brain works, you think of one tiny bad scenario and then all of sudden you’ve got a big dark cloud hanging over your head. When people ask how you are doing, the automatic reaction is to say “I’m doing good” . . . it’s hard to admit when you just feel like you aren’t coping well, especially when you are face to face. I know if I answer exactly how I’m feeling at the moment, the tears will start and everything will be blown out proportion all because of how exhausted I’m feeling. Today I feel like complete zombie, run down with a sore throat, tearful, a complete mess and in need of a shower. But as I sit here still in my PJ top and track pants cause Chloe puked all over my PJ bottoms, I’m also completely happy because this weeks blood results show that Chloe has progressed so much since January . . . even if it is a different progression to what most other normal babies are doing. What’s normal anyways?!?!?
