New shoes and skills

Jessica is continuing to do well and whilst she hasn’t yet had the confidence to start standing or taking a few steps without holding on to things, she is becoming very confident at walking whilst holding Mummy or Daddy’s hand and is very keen to practice this as much as possible!  She is gradually getting more confident and will now stand unassisted very briefly whilst moving between various items of furniture.  As Jessica is so keen to walk as much as possible, Nanny bought Jessica her very first pair of shoes when she came to stay a couple of weeks ago.  She is a size 3½ so has the same shoe size as Mummy (just in children’s sizes!)

Jessica has learned one very important new skill in the last week though and that is the ability to climb on to the sofa.  Our lounge has suddenly become a little more minimalist as we have had to remove certain items that are now within Jessica’s reach! 

We would like to say a huge thank you to Jessica’s godfather Bryan who ran the London Marathon recently in aid of Friends of PICU and raised over £700 for them.  Thank you also to everyone who sponsored Bryan and helped him raise such a fabulous amount.

Jessica has something to say...

Jessica has a little something that she would like to say…

Yes, we are very excited to announce that Jessica is going to be a big sister hopefully sometime near the end of October all being well.  She got to see her little brother or sister (currently nicknamed Pod) on scan earlier this week and all seems well as far as they can tell at this stage, although we will be having a cardiac scan in a few weeks to look more closely at Pod’s heart.  We have been told that we have around a 1 in 50 chance of having another child with a heart defect – hopefully all will be well with Pod’s little heart.

One year post-Glenn

This time last year Jessica was on PICU having just had her Glenn procedure, her most recent open-heart surgery.  Today, I have been watching my little girl laughing and playing with her cousins as we went to Black Park for the afternoon and feeling very blessed to be able to enjoy these precious moments.

We finally finished decorating Jessica’s bedroom and she moved into her own room for the first time on Easter Sunday.  So far she has settled very well in her new bedroom.  She has very much enjoyed having lots of chocolate over Easter and is still working her way through the various chocolate bunnies and Easter eggs! 

The community nurse visited last Monday and Jessica’s sats were in the 80s which was great and she now weighs in at 10.19kg (22lb 6oz) so is gaining weight beautifully.  Jessica has now got her new glasses which will hopefully help correct her squint – the first day she had them she was keeping them on for 20 minutes at a time but the next day she managed to keep them on all day which was fabulous.  It is clear that they have made a difference to her vision – she definitely looks more intently and concentrates more on her toys when she is playing now and she has become much more confident at cruising around the furniture and is getting very quick on her feet now, particularly if she notices that the safety gate on the lounge door has been left open by mistake!  She has managed to stand unaided very briefly (just a few seconds at a time) and is very confident at crawling up the stairs although is usually quite breathless by the time she reaches the top.

We have a new favourite sign this week – Jessica has now started signing ‘love’ in response to ‘I love you’ which is lovely, particularly when she signs it unprompted!  She has also added ‘rabbit’ (not always easily distinguishable from ‘cow’) and ‘duck’ to her signing repertoire (this one being a particular favourite at bath time!)

It is so wonderful to see how she is going from strength to strength particularly when we think back to this time last year when Jessica had such a difficult recovery from her Glenn thanks to a wound infection and a bout of parainfluenza.  She is such a huge blessing in our lives and we thank God every single day for the fact that she is here and doing so well.  Thank you too to all our friends and family who continue to support us throughout Jessica’s journey.

A quiet week

Jessica is now much better although last week’s vomiting bug definitely knocked her for six and it was a good few days before her energy levels and appetite got back to more normal levels.  As a result, it has been quite a quiet week, with just spending most of her time at home having lots of cuddles and playing with her toys.  She has been very proud of herself as she has learnt a few new things this week – she has worked out how to stack the rings on the stacking ring pole and gives herself a little round of applause every time she gets one on there!  She has also added a few new signs to her repertoire – ‘thank you’ (our personal favourite!), ‘sleep’ and ‘cow’.  

 

Home again

Jessica had a very good night's sleep and was almost back to her usual happy self this morning. She has managed to eat a little and drink something other than dioralyte and has had much more energy. Her sats have been in the high 70s which is still a little lower than usual for her but within acceptable limits and her temperature has been normal so we have been discharged and are now back home. Hopefully we can stay out of hospital for a while this time!

Back in Wexham Park

Jessica is back in Wexham Park Hospital as she has come down with a tummy bug and wasn't managing to keep fluids or her meds down at home.  We came in yesterday afternoon and since then Jessica has just been taking very frequent and very small amounts of dioralyte.  Thankfully she has managed to keep the dioralyte down so far and has not needed to have IV fluids but the team here are keeping a close eye on her fluid intake at the moment.  She has also been started on antibiotics as she also has an ear infection which has been giving her some quite high temperatures at times.

Jessica needed oxygen overnight to keep her sats above 76 but today is a little better and has only needed the occasional waft of oxygen.  She has been quite listless and sad today and so has been having lots of Mummy snuggles.  Hopefully she will start feeling better soon and back home again.

Hospital visits

Jessica had a couple of hospital visits last week – the first was at King Edward VII Hospital for her eye check-up on Monday.  The team there have now decided that it is time to try glasses to see if this helps her squint so we have a prescription for glasses – we just need to go and get them now and then the challenge will be getting Jessica to wear them!  She also had a dental check-up on Monday and got a sticker for being a very good girl there.

 

On Tuesday, we had a check-up with the paediatrician at Wexham Park.  Jessica weighed in at 9660g (21lb 4oz) so is staying on the 25^th centile for this and height was 76.7cm which keeps her on the 2^nd centile for height (so far taking after Mummy rather than Daddy!).   She had been a little unwell in the couple of days before the appointment but her sats were 84 when checked by the paediatrician so all seemed well.  However, shortly after getting home, Jessica went a bit blue and when her sats were re-checked they had dropped to 65 so we went back in again.  Her sats did pick up again back into the 80s (still not quite sure what caused the drop) and we were back home after a few hours on the paediatric assessment unit with a diagnosis of a viral ear and throat infection.  Thankfully a couple of days of regular doses of Calpol and lots of snuggles seemed to do the trick and Jessica seems much better again this week.

Having helped Grandma celebrate her birthday a few weeks ago, it was Nanny’s turn for birthday celebrations at the weekend and Jessica enjoyed seeing her aunties and uncles and having lots of cuddles with them all.