Little Nola your turned four months old just over a week ago. This is the second update I have written about you and boy have things changed since I wrote the last one.
Right now I'm not sure if you will ever be able to read these.
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| In hospital |
General/milestones
I think the biggest change is finding out you are very likely to have a rare genetic condition. You began having seizures just before you turned 12 weeks, although when they started I did not realise that's what they were. I will explain in more detail in a separate post but you were admitted to hospital for three days at the beginning of December where lots of tests began to try and find out what was causing you to have seizures. You had an attempted MRI scan which couldn't be done because you were awake, an EEG test and different bloods taken. There were some abnormal results from the EEG tests so an urgent request for an MRI was made to try and get a good look at your brain. You didn't have any seizures whilst we were in hospital which is typical and didn't experience any more for a couple of weeks. You then had a MRI under general anaesthetic where some growths on your brain were discovered. The discharge letter I received said the findings were 'highly suspicious' of a specific rare condition, something until that day (19/12/17) I was oblivious to. It's a condition that affects people differently with symptoms ranging from mild to severe, so right now we don't know how affected you will be.
The day before you had the MRI you began having these odd spasm type movements which I know now are another type of seizure. On Christmas Eve night I ended up taking you to the children's ward because you were having these spasms following a different type of seizure. We were admitted so you spent your very first Christmas morning in hospital which was so sad. You did get discharged as you hadn't had anymore seizure episodes but within a couple of hours you went back via an ambulance as we were advised to call 999 if you had a seizure that got to three minutes long. So we spent the next two nights there until we saw the paediatric consultant who specialises in epilepsy. You were prescribed medicine to control the seizures but the spasms went on and you were put on another medication aiming to stop them after the results of a second EEG were worse than the first. Last week you had a heart scan which also revealed you have two growths on your heart, you then had an ECG which fortunately revealed your heart is working as normal at present. We also saw a specialist at Addenbrookes hospital who agrees it's highly likely you have the rare genetic condition but no one will confirm it until we have the genetic blood tests back. You have an appointment at the end of the month to have your eyes checked for any growths. It's all been hard to take in as it would be for any mummy, I still don't think I've fully got my head round it but I will be with you every step of the way, I'm so sorry this has happened to you, you are so brave!
Apart from all of the drama that you've had, what else has gone on since my last update?
You had your first holiday at Bluestone in Wales, unfortunately this was when the seizures really kicked in so we didn't make the best memories.
In December you were chosen as one of the new brand reps for Petal & Grace, a beautiful hairband company on Instagram. Their bows make you look even cuter than you already do!
You still enjoy cuddles and can be very snuggly, sometimes you won't calm down if you're upset until you are being cuddled, sucking your dummy and having your face stroked!
One of the most upsetting aspects of the seizures is that they can affect development unless they're under control. This has happened with you, before this all started you began to giggle, even though we only heard it once or twice, it was starting to happen. Since around Christmas day you barely smile, if we're lucky we see maybe one smile a day. I'm told once the seizures are under control you are more likely to reach the general baby milestones.
I've had to move you up to size 3 nappies, as you are growing into a right little chunk!
You've had your second round of routine immunisations and due the next batch soon.
Feeding
One positive is that your appetite hasn't changed, you still love your milk and guzzle it down. You are still having 5oz bottles, usually five a day, sometimes more as there have been several nights you have woken during the night and needed a bottle to settle you. If you've had a very long stretch sleeping overnight I give you a 6oz bottle and have tried 6oz bottles before bed to see if that helped with sleeping few but it hasn't always worked!
Sleeping
Most nights you have slept through but there have been several where you have woken up once and at worse, twice. You're actually sleeping more than you're awake at the moment. I've been told it's probably down to a combination of medicine and seizure activity.
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| Your second EEG test |
Weight
You were weighed last week when we saw the specialist and you're now a whopping 14.7lbs thanks to all the milk you've been knocking back!
Clothes
Clothes wise you still fit in some 0-3 month clothes but some are too small. You are also wearing lots of 3-6 month clothes too and most need some growing in to.
More Nicknames
I
wrote a post about your name and the nicknames I had come with so far. I still can't help the random names that pop into my head. Roly is still the one I'm using the most!
Here are the ones I added last month and below there's a few more!
23. Rooka Took
24. Rooky
25. Angel cake
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| Cuddles with big brother at Bluestone! |
Your Likes
- You still love cuddles
- You still love your bottles
- You still love having a bath, if you're crying beforehand you immediately stop
- You really enjoy being out and about
- You like watching and listening to Eliot
- You still enjoy being sung to
- You like your dummy a lot now! It's very soothing for you when you want it!
Your Dislikes
Still...Sudden loud noises
Still...Being taken out of the bath
Having clothes put on/taken off
Still...Being disturbed when you are comfy
Occasionally still...Being put in the car seat
I'm sorry it's not been a more positive update Nola I hope next month there is more good news to write!
xxx
