5 Month Update

General/milestones

I said it with your big brother, and I'm sure I'll continue to say it but I just don't know where the time goes, I can't believe you are 5 months already!!!
At present your seizures are under control (high five!!!), since the last update you've had one ambulance ride to hospital, your third lot of immunisations and an eye clinic appointment!
I'm convinced your seizure activity changed each time you had a round of immunisations, a week or so after the first set you experienced seizures for just over a week and then they stopped. A couple of days after the second set you began to have the infantile spasms, followed a few days later with another type of seizure. Then the day after your third set you stopped having any spasms. Coincidence I'd just increased the dose again? I'm not certain nor am I convinced but fantastic news  that the spasms are currently at bay! But before that last set you were a bit poorly.
 After the first and third set of jabs parents are currently advised to give their babies three doses of paracetamol to help prevent a temperature. Having the combined jabs, including the one for meningitis means you were more likely to get a temperature. I gave you two doses but because you'd been sick in the evening and I was already loading you with your anti epileptic medicine I didn't want to go over board you and give you paracetamol whilst your temperature was normal. That was a mistake!! I woke up about 4am to hear you chomping on your hand, which was unusual for you as after going several hours through the night without a bottle, you'd normally be screaming! I felt your head and you seemed to be on the warm side but still took a bottle and drank it all. I then checked you with the thermometer and your temperature was on the high side. So I gave you  some paracetamol which you vomited back straight away so I didn't finish the dose. You then had a long, nasty set of spasms so I rang 111 for some advice as I was worried. They dispatched an ambulance based on the information I gave them.

This pramsuit makes me laugh because it makes you look huge!!!

When they arrived the paramedics checked you over, as your temperature was still high and your heart rate was out of the normal range they took us to hospital. By the time you were checked in A&E and again on the children's ward everything was back to normal, thankfully. After a couple of hours we were sent home, with the overall medical consensus that you had a reaction to the immunisations.
  Apart from that little drama you had your eyes checked and we found out you have growths behind your left eye. At the moment they don't seem to be causing you any problems, time will tell but fingers crossed they won't affect your vision.
Development wise, you can see that having the seizures under control is making a change to your progression. You are more awake, I guess because there are no seizures to make you tired and your body has got used to the medicine. Being awake for longer means more time to interact, you are smiling more and you have giggled a couple of times which is the best sound, it melts my heart! You babble a lot and over the last couple of weeks you began a high pitched shriek/cry/shout and use it when you're both happy and upset. You still only give eye contact on your terms, when you're being held you usually avoid eye contact but will look at people when you are lying down.
This month you had your first bath with your big brother, you thoroughly enjoyed it but I didn't as I was worried you were going to slip out of my grip! You are still in size 3 nappies. Overall you seem to be on the whole just a lot more chilled out, you really like your oball and have started to grip hold of it. You absolutely love chomping on your hands and fingers and will stare at them for ages!

Enjoying your oball

Feeding

You appetite still hasn't changed, you would drink milk continuously if you could!. You were still having 5oz bottles, five times a day, sometimes alternated with a 6oz bottle but now you are on five 6oz bottles. If you do wake during the night I will give you less to help you go back to sleep.

Absolutely love looking/chomping/sucking your hands and fingers

Sleeping

You are continuing to sleep through most nights from anything between 9pm-11pm usually through until 7:30am-8.30am. You have slept through more this month but there are still times you have woken up.

 

Weight

I haven't had you weighed since the last update.

Clothes

Clothes wise you are mostly wearing 3-6 month clothes with some exception here and there. Such as a newborn size cardigan!

More Nicknames

I'm still coming out with random nicknames.  Here are last months and below there's a few more!     

26. Baboo

27. Baboose

28. Baboosey

29. RoRo Beans

 

    

Your Likes

• You still love cuddles especially if you're tired
• You still  love your bottles
• Bath time continues to be a favourite
• You still enjoy getting out
•  You still like watching and listening to Eliot
• The dummy is still soothing, mainly when you're tired.

Your Dislikes

• Eliot being 'too cuddly' or on the rough side
• Still having clothes put on/taken off if you are not in the mood
• Still...Being disturbed when you are comfy

It's been a more positive update Nola,  I hope next month there are more positives to write about!

xxx

 

I've linked this post up with Jenny's 'Bumps & Babies' linky!

 

 

Nola You're 4 Months Old

 

 

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.

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.

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

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

 

I've linked this post up with Jenny's 'Bumps & Babies' linky!

New Hair & A&E

If you follow me on twitter or Instagram you may have seen that I paid a long overdue visit to the hairdressers. And when I say long overdue I mean a year and a half :-0
The last time I had my bonce cut is when I was three months pregnant with Eliot. I realise this is probably 'shock horror' for many people but seriously time really does fly. Needless to say the ends of my hair were in a terrible condition and my poor locks really were crying out for a revamp.
I went to a salon I hadn't been to in my home town before. Luckily I walked in at the right time and just had to wait ten minutes for my haircut.
I talked through what I wanted with the hairdresser and she got to work.
It was literally like a weight off my shoulders as she snipped away! I love it, it looks and feels so much better and I can actually do something with it whereas before I was just scraping it up out of the way. Overall I'm very pleased with the cut but why oh why do hairdressers always take off more than you requested?
Feeling good about my hair I went shopping in the hope that I may have some success with outfits for Britmums. My mum was looking after Eliot so I made the most of baby free shopping! I bought a few things but I'm not overly happy with them, I need to try them on again.

When I arrived back at my mums she said that Eliot had had an accident. He'd fallen off the bed face first. My little man had a red nose and upper lip. He hadn't been sick, there was no bleeding and he didn't have any bumps. We thought to be on the safe side we'd take him down to A&E to get checked over. He did seem ok in himself but as I hadn't been there when the accident occurred I wanted some medical reassurance he was ok.
As expected there was a fair bit of waiting involved, Eliot got cranky as he wanted to crawl all over the floor.
We saw a nurse who assessed him first of all. He was a bit uncooperative but thankfully she said he appeared ok but we would need to wait for a doctor to check him over.
It wasn't too long before we were called again. The doctor asked some more questions and carried out some checks, much to Eliot's disapproval. E was not a happy bunny and screamed the place down. But after his battle with the doctor we were told that all looked well, thank goodness! We were advised to bring him back if there was any further concern.

                Having a late dinner & choc buttons after his ordeal.
                                   
                       So I guess it's true, Friday 13th is unlucky for some!

Have you had any bad luck on Friday 13th?