Today was the long awaited paediatric endocrine appointment. I say long awaited as we've believed now for several months that G's growth has gradually slowed down. in the past our consultant has always been fairly happy with growth, and delayed the introduction of growth hormone. Today, we turned up armed with pretty graphs and excel data (created courtesy of my slightly OCD yet computer whizzy hubby) ready to prove our point. To our dismay, or perhaps amazement, we needn't have bothered. Figures spoke for themselves - inclusive of today's measurement, G has grown 6cm in 16 months, meaning she is firmly down heading towards the 2nd centile. Her growth is slowing. This only meant one thing, the inevitable injections were heading G's way, and sooner than I was prepared for...
Before we had a chance to ask the next steps, our consultant was reeling off a plan of action:
-Move our joint clinic appointment forward to ASAP. This will be our first clinic with 2 consultants from 2 different hospitals, one of which who has more experience in growth.
-A morning of tests an blood work at our local paediatric assessment centre to collect up-to-date information to inform the joint consultants. She mentioned a cannula. A CANNULA!
-Get a referral to the nearest endocrine nurse to discuss injection options.
-Training with said nurse to be booked in for administering the injections.
-Start daily injections within 3 months.
BOOM. The first real, tangible, concrete consequence, or do I mean evidence of her Turner Syndrome. Yes she's had heart scans and infact heart problems, yes she's had ear issues, yes she has dietary issues, yes she has many more related TS issues, but equally all of the above could be stand alone issues. Non TS related. And yes little G has had appointments coming out of her ears for the last 3 and a half years. But none of the above have been daily injections. Daily injections that will influence her body and her growth, that are a necessity if we want our beauty to stand a chance of reaching a height of the late 4 foot, or perhaps even 5 foot 0. Granted though, it's not vital for life. It's not like a diabetic who NEEDS those injections to stay healthy, and ultimately stay alive. I once taught a diabetic child who was incredible, and at the age of 8 did his own injections. Truly amazing, that will be G one day I'm sure -she's so independent. But us, we can say no to these injections. However equally we want her to have a chance. As a 5ft9 mother, I know all about height - from the opposite end of the spectrum all the same.
Whilst I am petrified of how G will react to all of this (after all this is the girl who cries walking in to a medical department, has severe anxiety around anything medical, and needs to be pinned down for regular blood work and booster jabs), I too am thankful. Thankful to God for her health, and for the fact that we live in a country where we can be offered this treatment, with no cost at the point of delivery.
So for now....I need to get over my worries about growth hormone and how G will be, and patiently await the various letters detailing the upcoming appointments and action plan. We need to purchase a special new doll/teddy and a fake injector pen, and we need to start drip feeding our girl. For she is not stupid. Before bed tonight she asked when she needs her injection next. She listens. She processes, She understands. She asks. She worries. I worry that she worries. I want to protect her from EVERYTHING in life!!
In other news:
-We've recently returned from our church weekend away. What an amazing weekend, and what a fantastic church family. G had a ball, and the added bonus was that most of my family were there too (including my delicious baby nephew). This proved especially handy when G wouldn't eat her dinner!
- We have applied for G's school place. HOW HAS THAT TIME COME ROUND ALREADY?
- We had a little scare with G's eyes recently after the flash of my camera reflected a yellowish/white in her pupils instead of the usual red eye. After seeing a campaign that gave a stark warning that a high percentage of eye conditions (including cancer) are often first identified from a flash photograph, I was more than a little worried. After persuading our eye consultant to see G before her allotted February appointment, and putting her through the upset of eye drops and an in-depth eye check, thankfully we were reassured that her eyes are perfectly healthy. PHEW! Know the glow people...
- Nasal swab tested positive. Yet again. Phone call appointment tomorrow to discuss the 4th potential dosage of antibiotics in just about as many months. DO ONE NASAL GERMS!
- No more scheduled appointments this side of Christmas! That is unless the urgent joint endocrine appointment or morning of tests decide to spoil our peace. Needs must, and all for the greater good. I do know :)
So, this post has turned out to be rather lengthy, congratulations to those of you who made it this far. Quite remarkable that I did considering I couldn't even think of a title today- emotions are all over the shop. With emotions in mind... Thank you to our amazing TS family, of which some have already responded to my SOS's this evening. Ladies, you rock. Thank you to those of you who pick me up and push me forward (Hubby-you are the best). But if it wasn't for our beautiful, loving, funny little G, then I wouldn't even be typing right now. I wouldn't change a thing.
<3 to a special TS mummy this evening <3
