We saw Evelyn’s paediatrician yesterday.
Digression: How many of my blog posts in the last twelve months have begun like that, I wonder? It seems like it’s all I ever begin with. We saw “insert medical professional here” yesterday and BLAH BLAH your baby is WEIRD. Is it just me? Am I the only one boring myself to tears?
Sorry. Back on track.
We saw Evelyn’s paediatrician yesterday, who immediately let us know that Evelyn’s last lot of bloods showed her to be severely anaemic. Her haemocrit levels were a 3, when they should be at a minimum of 30, and her ferritin levels were a 2, when they should be 100.
Iron supplements have been started and thank all that is holy (seriously, rub your Buddha, praise your God, pet your kitten, whatever floats your boat) she is managing to swallow her meds. Sure, it takes me more than five minutes to give 3ml of iron, a drop at a time, but it’s going in and it isn’t being spat or choked on. WINNING.
Of course, her serious anaemia leads into some serious concerns about the fact that the baby isn’t eating anything except breastmilk and the occasional accidental pea.) Thus far, I’m managing to meet her calorie needs, as exhibited by her lovely chubby cheeks and no weight loss, but I’m not managing to meet her nutritional needs any more – not without some form of supplementation happening. And yes, before you ask, I’ve added an iron supplement to my diet as well, just so that we can cover all bases. Because, EXHAUSTION.
Evie has been referred through to the Hospital Dietician, she is being booked in for a Barium Swallow to check for structural issues, and we’ll start the baby steps to get her coordinating her swallow effectively and hopefully transitioning back to solid food again.
“You need to realise though, this process is going to take months, at least. It won’t happen overnight.” says our Paed, as I rock and laugh maniacally in the corner. How do you supplement a baby who won’t take a bottle or cup? HAHAHAHAAA.
They can work that one out for me.
In any case, Evelyn is under the care of a fantastic team, both at St Giles and The Royal Hobart Hospital. I cannot speak highly enough of their care and commitment to Evelyn’s health.
She’s also been referred through to our geneticist, so that he can look at the probability of Ehlers Danlos (dislocating joints AHOY), or whether there is more testing that needs doing, to look for other conditions as well.
In the meantime, we have a sleep deprived EEG booked for next week. I have to wake Evelyn up at 4am to make sure that she is nice and exhausted and angry and OPINIONATED for the EEG sensors, before hopefully falling asleep and exhibiting her constant sleep-twitching. I’m not looking forward to that one. Actually, I’m not looking forward to anything much at all. The thought of trying to get Evie to do anything she doesn’t want to do fills me with a special kind of dread.
Upside: It’s her birthday on Sunday. I have successfully kept this complicated baby alive for almost an entire year now. CELEBRATIONS. CHOCOLATE. CAKE.
I think I’m winning.
Comments
13 responses to “Ehlers Danlos, the baby that won’t swallow and a series of tests. Plus severe anaemia.”
I am glad you are in good hands and she is swallowing her meds. I hope you get some resolution of her issues .
Happy Birthday for Sunday Evie. Veronica you are an amazing person. I think you are winning too.
Lots of luck and love. Ai, a long and difficult road
You are winning indeed. I shall have chocolate cake on Sunday to celebrate along with you. 🙂
Fingers crossed for all the tests and future appointments.
Definitely winning, Veronica. I think of you often and think of you both as part of that strange phenomenon that is the bloggy family. Which means I’ll celebrate her birthday too in my own small way and celebrate you too. And send all the positive vibes, wishes and what not out into the ether, because I believe that collective energy has to do something good for you both. xx
1 year old already? where has that gone?
Sounds like you have a good team – well we have the same paediatrician so I know you are in good hands there …
Hope that all goes as well as it can with the eeg ..
Happy Birthday for Sunday Evelyn xx
Well damn! I was going to suggest adding the iron etc to a bottle, then I read that Evelyn won’t take one.
Some would say these things are sent to try us, but I say enough already!
Is she managing any type of foods at all? Semi liquids sucked off a spoon? Sloppy mashed potato with beef broth mixed in? (beef broth=iron) hopefully?
I do hope this all gets sorted and treated quickly, the anaemia in particular.
Happy Birthday for Sunday.
And I’m glad you are taking iron supplements as well, exhaustion isn’t fun.
Wow I can’t believe she’s 1 already!! Happy birthday Evie!
I am glad you have good medical care and a loving and supportive family. If I were rich I would buy you a team of specialists and cleaners and shoppers and masseuses and nannies so you could and your husband could just have a day to yourself, and a little bit of a rest from it all. I send you all my love.
Hopefully everything gets better health-wise for your little Miss xhugx
HAPPY 1ST BIRTHDAY EVELYN! 🙂
Not sure if it’s the same liquid iron we give our girls but once they have teeth I am meant to rinse their mouths out otherwise it will stain their teeth. Goodluck Veronica.
It’s so sickeningly syrupy that I think wipe her teeth over afterwards too. Thank you for reminding me.
Our daughter (EDS3) also had lots of problems with swallowing. A little different to Evelyn but at around 6 months she started to choke on / aspirate fluids. She seemed to lose the ability to coordinate her swallow when sucking a bottle, drinking from a cup or eating runny food. We had to take her off all ‘spoon’ foods and only give her finger foods that she could mouth and suck. We made her formula into a super chunky custard. And for extra fluids she sucked wet washers. These strategies seemed to slow the rate of food and fluid entering her mouth – with her being in control – and she essentially taught herself to swallow again. However at nearly 6 years of age she still gags / chokes on fluids several times a week including fluid coming out her nose – if she doesn’t get herself ready to drink and just hurriedly takes a swig of her water bottle or drinks to quickly from a cup (if she’s not concentrating) she gets herself into difficulties. She was eventually checked for a submucosal cleft-palate (negative) but she does have hyper-nasal speech indicating poor functioning of her soft palate. Like all things with EDS she is far worse when fatigued and needs to be very careful with fluids when tired.