Last Feeding Clinic!

Today Asa has been discharged from the feeding clinic! I am thrilled as it means Asa is eating ‘normally’ and the speech and language therapist and dietician have no concerns over his eating or dietary management. Considering his gross motor development stage is around 4-5 months (due primarily to him not being able to sit up unaided), he is able to eat baby food that is age appropriate – so he is currently 10 months old and he is eating baby jars for a 10 month old. The dietician said she would not have expected this and said Asa is doing very well. There are still some challenges with Asa’s feeding, such as him tolerating larger lumps and occasional gagging and almost choking, which I hope will improve with time. We have a few recommendations for Asa to be going on with:

–          Doidy cup for drinking (an open slanted cup)

–          Lateral placement (i.e. Directing the spoon to alternative sides of Asa’s mouth (so that he learns to chew properly)

–          Continue to offer a range of textures and tastes

–          Offer ‘bite and disolve’ finger food, such as Organix goodies ‘toddler crisps’

–          And finally, my least favourite: messy food play. Eww, gross! (I promise to share a few photos, one day! Please hold me to it!!)

 

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A good friend will often encourage you at times when it might be most needed. Or even just write you a random note for no reason. This evening, I found this post-it note on one of my kitchen units. Thank you Coral, for your encouragement and friendship! :-)

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Hearing Review – MAP

This morning we had Asa’s audiology Multi-Agency Planning (MAP) meeting at UHW. After a stressful time stuck in traffic and trying to park (one of the car parks was closed and it was absolute chaos – I was in tears!), I took Asa in to the hospital while Jon tried to park. I didn’t think he would be able to join me, but two minutes before we were called in, he arrived – phew!

I was a little nervous, as you might expect from me(!). This was our first MAP and it was all so new to us. Having Jon there with Asa and I was such a blessing. He is such a strength to me, a calming influence – my pebble. (I once called him my rock, and he replied that he didn’t think that was the case, and that he was more like a pebble than a rock, so it has become our little joke!).

We met with the hearing doctor, speech therapist, teacher for the hearing impaired and two audiologists. Most of the people we had already met and they were so friendly and welcoming. We discussed Asa’s hearing, whether he is wearing the softband regularly, what sounds he was making, the use of Makaton and any concerns or questions. Also Cath, the teacher, gave her report. At the moment, Asa’s favourite (read: only!) sounds (other than crying, giggling and wind!) are the ‘raspberry’ and a long vowel, ‘ahhh’. Everyone seemed pleased that Asa was making small progress with his sounds and Lowri, the speech therapist, even thought she heard a ‘b’ sound from Asa that we’d never picked up before. Subtle sounds aren’t easy for us amateurs to pick up on!

We asked Dr Roberts, the hearing doctor, whether Asa might now be suitable for conventional behind the ear hearing aids. Upon examination we were informed that Asa’s ears are still too small and so it’s not feasible. I must admit I was rather disappointed. The softband does help Asa’s hearing, but it’s hard work – it gives quite a lot of feedback when knocked or rubbed, especially if Asa is on the floor or in his highchair. I have to adjust it regularly as sometimes Asa pulls it, or it slips out of position. He also, somehow, manages to turn it off on occasions! But for now, it is the softband or nothing, and as we want to help Asa as much as we can, we’ll continue with it until a time when Asa’s ears are big enough for the alternatives.

The doctor suggested we do an impromptu hearing test because Asa was sat up with minimal support. Off we trotted to the testing room. I’m glad I didn’t know that this test was on the cards as I would probably have been very nervous and I’d have worried about it the night before! Asa sat on my knee and the audiologists looked for a response from Asa to show that he had heard a variety of sounds. When he heard a sound, he was quite consistent in his response – he stilled, eyes widened and if he liked the sound he would smile and move his feet. He seems to prefer high pitch noises such as ‘sh’ and ‘s’ and he smiled consistently upon hearing these type of noises.

The second test the audiologists did was a tympanometry – a test to see how freely the ear drum vibrates to conduct sound to the inner ear. Asa had one in September which showed ‘glue ear’ in both ears, resulting in a moderate hearing loss. Today’s test showed one ear ‘glue ear’ as expected, whilst the other ear showed some ear drum movement which implies there is less ‘glue ear’ than a few months ago. We know that ‘glue ear’ fluctuates (i.e. can get worse and improve throughout the year), but we also know we have a healing God! We’re praying the ‘glue ear’ gets less and less over the coming months and will remain that way!

We went back to the meeting room to discuss the results. Today Asa heard sounds at 45 decibels, wearing the softband. We were thrilled with this! ‘Normal’ speech level is around 50 to 55 decibels, so this test shows that Asa is probably hearing a very good range of different sounds needed for speech. It is interesting that Asa responded so well to the higher pitched ‘soft’ sounds such as ‘sh’ because previously the audiologists thought that this was the pitch of hearing he most struggled with. We are praising God for such a good hearing test today.

PRAYER POINTS:
If you are a Christian reading this blog and pray to God, then please join us in praying for Asa’s hearing, that the ‘glue ear’ would decrease and that his hearing would improve in order to develop good speech.

Some photos of Asa enjoying his tea later on that day…

P1090823 P1090824I think Asa is quite proud of the mess… He certainly looks very contented!!!

 

Beaches and Sunsets Are Made For Each Other

Today, we spent the afternoon at Southerndown, perhaps one of our favourite places – the cliffs and the beach, the scenery and the rural walks – beautiful. We took a picnic but as it was rather cold to sit outside, the four of us had our lunch in the car at the top of the cliff. We decided after lunch that we would move the car to the bottom car park so it would be less walking for Emelia and pushing the pram. However, the car refused to start. Yikes! Some kind people gave Jon a hand and eventually it got going again. Afraid it wouldn’t start again, we agreed that one of us would stay in the car with Asa, and keep it running. Jon and I took it in turns to walk with Emelia on the beach. The sun was setting as we were walking. Beaches and sunsets are made for each other, a bit like jelly and ice cream, flowers and vases, icing and cake – like Jon and I, and our lovely children. We are made for each other. How I love our little family!

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Today has been a lovely day, spent marvelling at creation, eating, laughing and making memories. It’s a bit like the calm before the storm, as we know January is going to be very busy. Already we have 10 appointments for Asa lined up and one for me! Over the next few weeks, Asa will see the ENT (ear, nose and throat) specialist about his stridor (noisy breathing), physio, the community paediatrician and blood tests, feeding clinic, portage (child development / psychology service), audiology MAP (Multi Agency Planning), and in two weeks time, we will start at the ‘Speak and Learn’ communication group for children with Down’s syndrome. Most of these appointments require child care for Emelia, so thank you to friends and family who have already offered.

So, as we embark on a new year, we are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We’re counting our blessings (namely two that go by the names of Emelia and Asa), and praising God for his goodness and faithfulness to us now, and in the future. To our friends and family, happy New Year! xx

Asa’s First Christmas Party

Today was Asa’s first Christmas party at Scallywags, the parent and toddler group in our church. It was a bit of a mad rush, as always, to get out of the house early enough to make it worthwhile going! Wolfing down breakfast, we got ready. I packed Asa’s bowl, spoon and banana, huge change bag and Emelia’s bag, put Asa in to the car seat and huffed up the steps.

We got to Scallywags and Emelia was happy to eat her party food with the other children, while I remained in the ‘baby corner’ to give Asa his breakfast. On days like this where I need to be out of the house early (well, early for me!), I’m so thankful I can chuck a banana in to the change bag and feed Asa out and about! I’m very relieved he likes bananas!

It was while I was feeding Asa that I stopped to look at the other precious little lives in the baby corner – Asa’s school buddies probably. Two sets of twin boys and another little baby girl. This is the first time Asa has been awake and around other little babies, so I have never intentionally or otherwise compared him to another baby. I noticed these babies seemed much more physically developed than Asa, in terms of their gross motor skills. Yes, they are a few weeks older than Asa, and yes I know that all babies develop at different rates. Even amongst ‘typically developing’ babies there are massive variations. But in my heart I felt sad. I felt we were the ‘different’ ones in a room full of ‘normal’.

As tears started to sting my eyes, I had to look away. I kept trying to tell myself that it didn’t matter; that all babies are different and I tried to focus simply on feeding Asa his mashed banana. I felt my eyes wander every now and then and saw these little ones attempting to roll over, waving their chubby arms and legs, holding toys, babbling away in secret baby code. Then I looked at my beautiful baby boy who didn’t seem as strong… who isn’t anywhere near rolling over… who can’t yet hold a toy… who doesn’t have (yet) the usual baby babble… And my heart ached. Please don’t misunderstand; I am in no way jealous of these other mums. In fact, I probably couldn’t cope with twins, so hats off to them! I am blessed with two beautiful and healthy children. This is my frustration – I can’t really explain it in words. I just felt a bit heart-sad I suppose.

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Banana totally demolished by little Asa (followed by banana scented sick – eww; I hate reflux), we headed off to see ‘Father Christmas’ in the main hall. I put on Asa’s softband hearing aid, feeling rather conspicuous. We sang a few songs and then all the children went to get a small parcel from Father Christmas. Wonderful! Emelia was rather excited, running around with her usual boundless energy; Asa snuggled up on my lap, watching the comings-and-goings. I was talking to one of the kitchen volunteers and noticed someone across the hall pointing over in our direction and talking to her friend. I looked behind me and as I was against a wall, obviously there was no-one else there behind me… I was already feeling vulnerable and disheartened, so maybe this was more in my head than in reality, but I strongly felt this person was pointing at us – I couldn’t see who else it might have been. It could have been something as innocent as ‘cute baby’… or ‘I wonder what that baby has on his forehead’. Or it could have been something else. But you know what I’d prefer? I’d love people to come up and ask me if they have a question about Asa or Down’s syndrome. I’d happily answer questions about the softband, or hearing loss (not that I’m an expert!) or how I am doing or how Asa’s doing. I’d love not to be pointed at or talked about… I guess I understand though, to some extent…

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Today has been ‘one of those days’ I suppose, where my heart has been tugged as I realise again that yes, Asa is different. Right from when that extra copy of chromosome 21 was made, he was marked to be different. This is the way God has designed him, right from when sperm met egg. We are all different because of the impact of Asa in our life. We are blessed. We are busy. We are happy. We are stressed at times. But we are family. This is our life. It is a little bit different. But being different isn’t bad. It’s something to be celebrated – and I’ll get back to more positive blogging soon. This blog was never designed to be a ‘rose tinted’ version of DS, and for those of you who know me will know that I am usually a pretty honest person when it comes to sharing my life – the ups and the downs.

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Asa 22 weeks _Christmas Jumper
Asa’s new winter jumper! :-)