We are family......

I have been thinking a lot about Jellytot recently. I guess it is because I watch all the other mums struggle with their siblings. While they do tend to entertain each other, from a parent's perspective, it can't be easy. Juggling time. Juggling energy. Juggling focus between more than one child. But more importantly, it is because LBM has been talking quite a bit about her recently. They have a sort of Postman Pat like relationship. Exchanging birthday and Christmas gifts and letters. More like pen-pals than siblings and this makes me sad. His little voice sings when he says her name and he proudly tells his friends that he has a sister but that she doesn't live with us. Thankfully, they are too young to question why. Sometimes he tells them she stays at home to look after the dogs. This freaked me out a bit until I realised there is a photo of her on the sideboard, stealthily watching what the furry mutts are up to all day. Occasionally when he's helping me lay the table, he sets a place for her. This makes me cry but I bite my lip and stand tall.  I don't want him to see this. See our sadness. Or feel our sadness.

It took time but we eventually accepted their decision and I thought we were ok with it. I know she is happy and settled with her new family but the emotions are still raw. No matter how you look at it, it still feels like yet another loss of a child. So, I bite the bullet and send Mr and Mrs Jellytot another message asking if we could please meet up. I have tried before to arrange a meeting but they have always felt it wasn't the right time. They have an older birth son who already has the role of the 'big brother' in the family and they are cautious of introducing LBM to the picture. They have actually met once before when they were both in foster care and he proudly has a photo in this life story book. Sadly he has her in more of a headlock than a hug but still, it remains a treasured photo. But I feel it is time. It's LBM's time. This is for him. And for me? Cake, cake. I need cake. Or maybe a Portuguese Custard Tart. Snort.

Dream big little one......

We return home from yet another sublime holiday in the southern hemisphere, all of us enveloped in sun and a good dose of squishy family love. That kind of holiday when you return home and still find sand in your flip flops and you feel a lump in your throat.  The house is cold and dark but I can see a single light flashing on the answerphone. Its a message from the hospital. The first batch of growth hormone injections for LBM are ready for collection. We stand by the phone slightly shell shocked. Play the message over a couple of times. The truth is, we hadn't actually decided if we were going down this route. We spent many hours under the African sun wondering if this was the best thing for him. Are we actually comfortable injecting our LBM with hormones?  But it seems the doctors have made the decision for us. His tests have come back showing his pituitary gland is producing less that 50% of the growth hormones he should be and we need to act fast. So I guess we are doing this.

Our lives for the next 14 years will be filled with these daily squirts of grow globules. I'll admit the first few injections didn't go well and drew some tears (from ALL involved) but a a few weeks in and LBM has embraced them. The hospital have been incredibly supportive. LBM has a DVD, a grow chart, a book all about how grow globules work, and a sticker chart. And a few months in now, he has actually grown! At first it was only his feet and his err....cough..cough...winky. But we now have an actual height increase. Yes, my friends, this grow juice is the business. Ok let's hope he will never go from being LBM to the BFG but as soon as we hit the 100cm mark, we are so having a Roald Dahl party.

And speaking of party, this is a good time to tell you about that lemon drizzle cake. Golly this one is good. I didn't add the lemon verbena at the end but it was still the cats meow!

Silence is golden......

Soooo....I've been silent for a while. A long while. Truth is I didn't feel I had anything interesting to say. That no-one would be interested in what I had to write about it. But last night a friend asked me why I hadn't blogged for a while? She said that she truly missed my blog posts (and she hadn't even had any wine!) Anyhoo, it got me thinking. You know what...I've actually got a heck of a lot to say. It has been an emotional year and we have some catching up to do. So my friends, if you are prepared to listen, stay tuned. I have a lot to talk (and cry) about. Oh and I also have a fabulous new Lemon Drizzle tray bake to share with you that truly is the 'shizzle!'

Testing, testing....

And so the tests continue. Despite the amount of food LBM can put away, he is just not growing. So where does it go? Ok, he poos more than me and the dog collectively but why is he just not growing? At first it didn't bother me, as both birth parents are fairly short. But now at nearly 4 years old, he is noticeably still in 12 month clothing.  He is falling behind in swimming and sports, as he simply just cannot run or kick as fast as the other kids with longer legs. Something is just not quite right and we feel we need to succumb to more tests, as there is no chance they make school uniforms for 1 year olds.

All symptoms point to Prader Willi Syndrome. Hey, who doesn't want a Prada Willy (!) but actually it's a genetic condition of children with short stature who never feel full and are constantly hungry. Something which has been on my mind right from the start but was perhaps just too fearful to explore. And so yet another set of tests are scheduled.

The doctors and nurses are amazing and he is a little champion throughout the blood tests and examinations. He is prodded and poked and poked and prodded and we wait weeks for the results. The PW tests come back negative. I have mixed feelings about this. In some respects, I am thrilled and relieved. But on the other hand, I worry what it really could be. There is talk of further tests and the introduction of growth hormones which frightens me. I suppose it's the unknown. I don't want my little boy injected with stuff. In addition, they have found a significant heart murmur and so there more tests are on the horizon. I need time. Time to google process this and luckily with the public healthcare system, we do get time. 

The F word.....

Miss Delia finally drops his Life Story book off and while he keeps himself at a safe distance, she asks how things are going on the food front. I'm honest and upfront with her and decide to tell her the truth. It is still a major stress and a daily battle but things are slowly improving. We have come so very far and I have to keep reminding myself of that. So I try and look for the positives:

He will now leave the table during meal times to use the toilet (rather than simply pee on the ever hopeful dog lurking under the table for the scraps. Scraps, which incidentally never materialise.
He will now wait in a restaurant for his food to arrive without screaming.
He  will now put his hands or fork down (albeit only for a nano second) in between mouthfuls.

But there are still a number of hills to climb:
Like allowing me to leave the kitchen while cooking supper. Lord help me if I leave the room or heck, even dare to sit down.
Like knowing when to stop eating and drinking. He honestly has no 'full button.' Mealtimes last no longer than 5 min.  It is a stress for me and something I have found very little support for. Every other mum I know has the opposite problem. Wishing their kids would be like LBM and just "hurry up and eat everything on their plate!" Of course I want him to eat. Just not all the time. And not at that speed.  I have tried continuously providing mountains of food to perhaps take away the novelty factor. Let's just say it didn't end well. Perhaps I should have persevered but I honestly just could not sit back and witness it. It was frightening.

I so don't want to make a big issue of food and always try and remain as calm as possible, whatever the situation.  I come from a very sociable family who love food and the joy of meal times. Sadly now, parties and buffets are my nemesis and take a varying degree of anxiety management. He gets extremely anxious around mealtimes and it's a long ongoing battle to try and calm him.

We try and cook together so he can start to understand that food takes time and love to prepare. This does help somewhat and if anything, I really hope we have the next MasterChef champion here. 

He is unbelievably motivated and comforted by food. Food makes him feel safe. But we are battling on and just having to go with our gut instincts. We have come such a long way and I am so very proud of him. There really is just no support out there. Well, perhaps there is. And I just haven't found it.

Go with the flow.....

Need I state the obvious? It's been ages since I last wrote. Why is it that sometimes in my little world the words flow faster than a bottle of Sauvignon Blanc and other times I look at this blog and feel fear. I guess it's an underlying worry of not being good enough or my words not coming out right. But I have to remember why I started this blog in the first place. These words only need to be right for me and LBM. This is our story. And if it helps others along the way, then hurrah, that's a bonus.

Our holiday feels a lifetime away. LBM's speech has come on leaps and bounds since we got back. They always say holidays spark a developmental spurt...hey, any excuse to book my next ticket now!  Not only are there real words, there are a couple of real sentences. "More cake please mummy" of course being his favourite. However, as he was helping me put my jeans on the other day, he quite blatantly said, "Ooh tight Mummy" I can honestly say I nearly decked him! We are continuing with the speech therapy for a little longer,  even if it does regularly empty the bank account. Incidentally he is still on the waiting list for the NHS funded therapy and has been since October last year. I am so pleased we decided to go private, as it is certainly helping. If anything, it helps LRUN and I with advice on how to help him and that's a big plus. Sure You-tube could teach me too but this feels right and he loves his therapist, which helps with his confidence and social anxieties, which I'm afraid are still lurking.

Spring time found me drafting the first contact letter to Tummy Mummy. A strange concept and a difficult one to get your head around. On the one hand I want to gloat and tell her how amazing he is but I wonder if this is appropriate. I come to the decision that no matter what I write, it will be difficult for her to process, so I simply tell the truth. I talk about his developmental delay and the challenges it presents. LRUN questions why I tell her but I feel she needs to know.  At the same time, I talk about the good stuff. He is in a big boy bed now and is also in the midst of potty training (Feck! No-one warned me how stressful this potty training is. Trips to the supermarket now find me nervously pushing all the shopping in trolley to the back, creating a void beneath all his orifices whilst simultaneously calculating the number of steps to the nearest loo! Poo did you say? You need a poo? No, just a pop-pop?? Thank feck for that. And breathe....!) I tell her he loves nursery, enjoys a good chatter and is obsessed with cake. I have to read and re-read to ensure I don't give away any tell tale details of location. She lives so close and according to the book of faces (yes, yes, I still stalk her..hangs head in shame) now works in my favourite take-away joint. Well, that should at least help with my impending 'tight jeans situation!' We sign the letter with our names rather than mummy and daddy and drop it in the post box. As of today, we are sadly still awaiting a reply. This is so hard, I really want her to reply as I feel LBM deserves it but then is it more because I don't want to have to have the conversation with him one day of explaining why she never replies? This is tough folks.

Despite the tight jeans, (can you tell yet I am truly panicking?) I am in search of a summer cake. Strawberries and cream are sooooo last year. Is there such a thing as a Pimms cake, I wonder?  Oh my word,  google tells me there is! Pop-pop? No, that's just my jeans button......

Unpacking with long faces.....

And so we face another twelve hours in the air. I am desperately trying to stay relaxed and focused. LRUN is wandering around with multiple muslins hanging out of his pockets, flinching every time LBM even coughs. I have squeezed every change of clothing possible into our hand luggage as well as a roll or two of paper towel.

The flight is a dream. While a neighbouring child is throwing a tantrum in the aisle on take off, we are sitting calmly in our seats, all buckled up and doing airport sticker book number one.
LBM eventually goes to sleep and sleeps for several hours. Although I can't face eating, I actually get some sleep, albeit with one eye open on him. Even the landing is a success. Not a tear, not a whimper, not a dribble of vomit. Just pure excitement. An elderly couple in the next aisle lean over to tell me what an angel child we have. How impressed they are with him. The air stewardess joins in and says the same. I tell her about her our flight over. She says she hopes this doesn't sound rude but is so very glad she was not on duty!

Back home and although sad, I am feeling cake inspired. Move over red velvet cake.....Purple Velvet Cake is all the rage in Africa. I can't wait to try it.  I honestly don't think our dogs are happy to see us. They have had two weeks of toddler free bliss. LBM is a bit lost and keeps wanting to go outside. It's five degrees! He is babbling and signing about everyone from the holiday and I have to explain that they live in Africa and we live here. He is wearing the cutest top he got as a gift with a picture of Africa on it in a heart and we point to it and list all the people that live there but are still with him in his heart.  He shouts 'airpane' and then 'bleurgh.'

An African Summer......

LBM wakes up after an hour and we manage to change him into some clean clothes. I still can't find those plastic bags. How many nappy bags does it take to stash changes of clothes and blankets in. Many, I tell you. Many. LRUN is looking anxious. In fact he has built a wall out of blankets around himself to shield from the spew. LBM goes back to sleep. We order drinks but I cannot bring myself to eat anything. Perhaps it's just the smell of fermenting cheese and cucumber sandwiches but I am feeling queasy. I can't sleep as every few minutes I check that LBM is ok. He is in a deep slumber. He wakes up at breakfast time and is looking slightly more perky. A little more colour other than green in his cheeks too. He nibbles on a roll but is very thirsty and just wants water. Lesson learnt here. Always ration the water. Just as we are landing, he blows again. And so we are down to his last change of clothes in the arrivals hall. Gramps is so over the moon and overwhelmed with emotion to finally meet his first grandson that he happily accepts the fact that we all stink of spew.

I am so happy to be home. It's sunny and warm. We are surrounded by family, friends, incredible food (Oumi is an amazing cook) and tons of fabulous wine. And let's not forget the cake. In the corner of our garden is my step sister's cake emporium. Here she rustles up wedding and celebration cakes on a daily basis with exceptional grace and skill. What better way to spend the day, swimming in the pool with delicious smells floating above. It's not long before LBM discovers this world of cake. He is not keen on swimming and we try and bribe *hangs head in shame* him with a biscuit if he gets in the pool. He does so reluctantly but it's purely to get the biscuit and I can see he really doesn't want to. The next time I try, he sighs and wanders off. Returning with the biggest piece of chocolate cake ever. I can just see his thought process here. Why swim for a lousy biscuit, when cake lady at the bottom of the garden gives me mountains of cake for...well....just being me. Too right.

We had an amazing holiday. It felt so good to be outside all the time. LBM had a blast and coped really well all things considering. He bonded well in time with everyone. Doing a photo book beforehand with photos of everyone and the dogs really helped. I was a bit apprehensive at first as this is what he got when we were being introduced as his new family. So I was bit mindful as to how this would pan out. But I kept re-iterating who they were and that they were friends and family and it worked a treat. Everyone was so impressed with his signing and how we had managed to establish a form of communication with him over the last year. Gramps and Oumi soon learned the signs for cheese and cake. I had some very special time with my sister. I think LBM really absorbed my love for her as he bonded with her big time. Saying goodbye was very hard and I had to hold back the tears in front of LBM. I will always be a child of Africa and it's where my heart belongs.