It has been quite a while since I have written about the girls on here. The blog has taken more of a food and travel swing and as they get older I am more and more aware of what I write about them for obvious reasons.
I did however want to write an update about Chloe. I wrote about her allergies and the problems resulting from it a few years ago and I thought it would be good and perhaps helpful for other parents of children with allergies to see a little light at the end of the tunnel.
Chloe was born a healthy baby after a number of health scares during pregnancy and it was an immense relief that she was alright. She was a wonderfully happy and loving baby and slept well for long stretches in the night. I was almost a little smug.
However it didn’t last and when she hit 7 months old she began to change. Her sleep became erratic and frequently disturbed and not like you expect from all babies but 20-30 wake ups every single night. Then the sickness began and for ten long months she was sick most days. And it hits you. You are walking around in a sleep deprived state, angry and on the edge of tears. You feel helpless for not being able to comfort and soothe your child. We began cutting out food groups, dairy was the first to go, quickly followed by soya, banana and eggs. A small improvement showed but the sickness continued, the night pain, the many nights when she would lay curled in a ball to ease her discomfort and being unable to keep her hands and feet still unless they were held. Looking back it looks like a really long nightmare. Finally we began to see bigger improvements after we eliminated all gluten and her consultant ran another batch of tests before deciding some scopes were necessary, now this simple procedure can be tricky on a baby/toddler and because of that it required general anaesthesia. It is hard to explain how frightening it is to watch your little one be put to sleep in front of you.
All went smoothly but the tests showed that Chloe had an extreme amount of damage to her stomach, oesophagus and bowel. Damage which is in line with a coeliac. However as we had cut out gluten for over 6 weeks before the operation they couldn’t be 100% sure. Due to the damage we were told Chloe would need at least five years off gluten even if other food groups were eventually reintroduced.
You would think that with the results we needed and the food groups eliminated that life would become easier. But it was still a battle, we had a daughter who was incredibly clingy and dependent on us, who still barely slept. Who still had a weakened immune system and damaged belly, who was pale and thin and who only had to have a small cold to instantly lose all of the weight she had begun to gain. It was difficult to see when it would improve. Meal times were a battle to find foods which would nourish, fatten and yet also avoid dairy, gluten, soya and eggs ( and banana ). Eating out was out of the question, no restaurants or food outlets locally catered to all of those needs. Taking her to birthday parties or family meals involved almost military precision planning. It was exhausting.
And I know that there are bigger problems. Children with more serious illnesses. Of course I know that. But this was our problem and it felt huge.
As the months went on and Chloe became a little stronger and a little more rosy cheeked we were told to try introducing some of the food groups. Dairy and Soya were a big no no with instant sickness, but we managed to reintroduce egg ( slowly ) and that meant we could buy her a normal sliced loaf of bread. Such a small thing it may seem but baking loaves of bread each week took time and effort, and I was struggling myself at this time.
It has been a very slow process with Chloe and improving her health. It is always hard making others understand, understand when you choose to take your own food with you because the thought of her food being contaminated is scary. It has been a pain reading and re reading ingredient panels every single day. Hard to make her big sister Izzy understand that sometimes we can’t just grab a treat from the shops because there isn’t anything suitable for her sister.
But you know what? She is a wonderful and happy child. Fiery and full of life. Always happy to accept that she can’t have the birthday cake that her friends bring into school. To understand that sometimes there isn’t anything in the shop for her but that we will always have a replacement for her, wherever she is. She has taught us to educate ourselves and our own families on the importance of cross contamination with gluten especially. She is an utter joy to be around, just like her sister. Her big sister who tells people that Chloe can’t have certain foods and checks if she can have something if she’s not sure. Who has hidden around doorways eating party bag treats that her sister can’t enjoy so as not to upset her.
Two years on and we have managed to introduce bananas, dairy and soya and although dairy is only a recent change it is absolutely incredible to see her enjoying butter and hot chocolates and CHEESE. Gluten may be years off ( based on an awful reaction she had after eating something she shouldn’t recently ) or it may not ever be an option but that is manageable. She is living at a time when gluten free menus are extensive and the ranges in shops whilst expensive are varied. We are lucky and others less so with more extreme allergies. But even just with one allergen to avoid it can be so time consuming and at times mind boggling as the simplest of products contain wheat and barley for no apparent reason, when manufacturers change ingredients or factory processes just as it becomes a favourite product. It can be hard but it is a minor hassle in the grand scheme of things.
She looks like a healthy four year old again. She is independent and happy, she understands her allergies and deals with it in a way which makes everyone proud of her. even her sleep has slowly improved, it can still be a bit of a battle but it is one hundred times better than it was.
I wish I had read stories like this 3 years ago, to see that it can get better and it really does get easier. That shopping bills will forever be more expensive but you just learn to look around more, explore the naturally gluten free products and cook more from scratch. Things do improve, even if just in the sense that you just get used to doing things differently.