New Reflux Medication

Asa’s reflux seems worse than ever lately. To the point where I’m teary several times a day. I know the poor little lad can’t help it, and I feel so sorry for him. And for myself. And the furniture, carpets and the washing machine. Asa can vomit up to ten times a day. Yes, I know “all babies are sick”, but this is different. This is an illness: Gastro-oesophageal reflux disease (GORD).

A new online friend on Twitter, G, suggested a different medication for Asa to try. Her little boy, N, has experienced reflux and she is a pharmacist so has professional interest. Yesterday I took Asa back to the doctors to see about a different medication for him, Omeperazole. Thankfully the doctor agreed. Also, on the advice of G, my new friend, I also asked about a feed thickener for Asa’s milk / drinks which should help keep it down in his stomach (God willing!) . Again, the doctor agreed. Happy mama!

Today, Asa started his new meds. So far, he has not been sick today. It seems as though the combination of Omeperazole and Carobel (thickener) has already worked. The doctor warned it could take 2-3 weeks to find out if the new meds would be helpful. Only time will tell if it these meds really will make a difference.

Donkeys, Reflux and Love

The sun is shining in Paignton. We’ve had a lovely time on the church weekend away so far, and today is our last day. It’s also been a bit stressful. Both Emelia and Asa were unsettled on Friday night – Emelia was awake until about 11.45pm. Asa was being a monkey and rolling over in his travel cot every five minutes. I was confined to the hotel room in the dark, with no wi-fi or phone signal. I suppose being somewhere new, and everything being different, most children would be the same.

With that behind us and a fresh start the next day, we were able to enjoy some of the teaching from Simeon Baker, our guest speaker. We had a free afternoon yesterday, so we headed to a lovely restaurant for lunch as a family. The venue had beautiful views from its elevated position overlooking the pavilion and the beach. After lunch, Emelia joined the other children from church in the park while we tried to rock Asa to sleep in the pram! Donkey rides were also available – and as you can see, Emelia seemed to enjoy it!

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Emelia’s friends, Shanisha and Evie, also enjoying a donkey ride!

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I’m going to take a moment to be open and honest with you, friends. Last night, Asa’s reflux was really bad. Vomiting everywhere. I couldn’t escape the smell of sick as it was on my scarf, t-shirt and trousers, not to mention on his bib and sleepsuit. I was teary and snappy with Jon and I wish with all my heart I didn’t take my frustration and hurt out on him. I’m not proud of how I react sometimes, and I more aware than anyone of how impatient I am, and how quick I am to get angry. Sometimes when I’m super-stressed, particularly lately, I’ve sadly been questioning God and why He chooses sometimes not to answer our prayers, especially ‘good’ prayers for healing for a loved one. I say ‘sadly’ because my faith has usually, nearly always, been strong…

At times when the reflux is bad, I cry out in prayer to God for him to heal Asa. Literally, cry. But for some reason, He doesn’t… This isn’t a prayer for material things, for more wealth or power, or personal gain, but for my precious little boy. I know it’s not ‘a big deal’ in the grand scheme of things related to Down’s syndrome, but it affects me, stresses me and upsets me, not to mention Asa. I wish I was stronger, more resilient, more trusting. Friends, at times, I feel so alone, even abandoned by God – and it upsets me that I would even have these feelings. As a youth leader in the church, I often remind the young people that we cannot trust our feelings. They fluctuate and are not always accurate reflections of how things really are. Sometimes, my heart and my head are in opposition, but I plod on anyway, rebuking the negative thoughts that occur in my questioning. Therefore, I have to keep reminding myself that God IS good. That I am NEVER abandoned by Him. That He sees our family is hurting, feels our pain. That He walks with us through the good times… AND the bad times, the disappointment and mire of our troubles.

This leads me on to Simeon speaking in communion this morning. He spoke for only five minutes, but it was as if God was speaking directly to me through him. He spoke on two verses. Yes – Ephesians 5v1-2:

“Follow God’s example, therefore, as dearly loved children and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”

The key part of the message that my heart thirsted after was this phrase, dearly beloved children”. It struck me so powerfully that I began to silently cry as I listened intently. God was clearly showing up for me, reminding me – and everyone there – that He does love us. He calls me ‘dearly loved’ and that is so amazing, that the God of the heavens and the earth loves me, despite my many flaws and sometimes wavering faith. What’s more amazing though is that He calls me ‘child’. I am His, and He is mine. My perfect, wonderful, awesome Father in Heaven calls me His.

I am so grateful for Simeon bringing these truths out this morning. It was exactly what I needed. Don’t we all just need that reminder sometimes? That we are loved, precious and worthy. You, reading this, are loved by God as a dearly loved child. Take a moment to absorb that fact, and praise Him.

The Waiting Room Conversation

This afternoon I was at the Doctors (aka my second home!) for a double appointment for Asa’s reflux and my gallstones. In the waiting room, an older gentleman asked me to turn the pram towards him so he could see baby Asa. We were chatting about his grandchildren and my children. He was looking adoringly in to the pram and saying how lovely my baby was. I took the opportunity to tell the man that Asa has Down’s syndrome. I could tell he didn’t know! His reaction was something along the lines of, “I’d never have guessed, with some of them you can tell straight away can’t you? But he doesn’t look it.” This is my point – what does Ds look like? And what did he mean by “he doesn’t look it”? Shouldn’t it be instead, “he doesn’t look like he has it”? Asa isn’t Down’s syndrome, he was born with it, he has it. It is a part of him, not defining him. These are just my jumbled thoughts, apologies if it doesn’t make much sense!

The gentleman was nice enough, and kept saying “oh I hope your little boy will be ok”, “I hope he’ll be healthy”. It was a little frustrating, because even though I kept saying, “Yes, actually he is healthy.” I must have reiterated this point three or four times throughout our conversation. He then told me about a man with Ds he knew when he was younger, and the man died young. (Good job I wasn’t in need of any encouragement!!!). I explained that each person with Ds is different and needs vary from person to person, just in the typically developing population! Asa is healthy. Down’s syndrome is not an illness. Yes there are certain complications that can arise with Ds, such as heart problems, thyroid function, issues with hearing and vision, as well as mild to moderate learning difficulties. A very common feature of Ds is low muscle tone, which can cause gross motor skill delays, such as sitting up and walking, and can have knock on effects on internal muscles. A person living with Ds may have every single one of these characteristics, or just a couple. Asa has a moderate hearing loss (which we think has improved lately) and reflux (possibly due to low muscle tone), but this does not make him unhealthy.

It’s always great to take these opportunities to challenge misconceptions and myths about Down’s syndrome. I actually quite enjoy having these discussions with people. I didn’t get the man’s name, but I hope he took something positive away from our conversation. One more person in the world has hopefully had some preconceptions challenged. One more person got to look baby Asa in the eye and see that Down’s syndrome isn’t something to be feared.

My boy and I – we’re myth busting, one person at a time! :-)

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! :-)