And then I had no choice, but to surrender

I’ve previously written about my son’s struggles with feeding & eating since his birth. When he turned two back at the beginning of May, he started refusing to be spoon fed the puree he’d been accepting for the previous 18mths. On a human level, I understood it – none of his friends were being spoon fed anymore, so why should he? On an emotional level & in terms of being his mother & needing to feed him, panic set in. My little boy who was still considered ‘failure to thrive’ (FTT) & had recently lost weight had decided to refuse all meals. His daily intake consisted of snacks & his two milk bottles & I was beside myself with worry.

I stressed about this day & night. The thoughts & knot in my stomach was all consuming & encompassing. My anxiety (Selma) was through the roof. I could see that there were no physical & developmental deficits from his lack of intake as he continued to be full of beans, energetic, able to understand my commands & had started saying a few words (although we had started speech therapy with him a few months prior). Our weekly feeding clinics continued & he showed the same level of interest he had in previous weeks (apart from his rejection of cold & wet foods) & I continued to be at a loss as to how to get him to eat meals at home. He seemed to eat some of his meals at creche which was beyond relieving for both myself & his carers as they were also worried for him.

I have often thought that having a child with feeding & eating issues was one of the cruelest jokes mother nature can play on a mother. Feeding your baby/toddler is primal & having this taken away from you is one of the most awful things for a parent to experience. A friend of mine called it ’emotional torture’ & I couldn’t agree more.

Months went by with no breakfast, lunch or dinner being eaten by him. He ate snacks, drank his milk & I was in a panicked frenzy every meal time & leading up to each meal. I decided to take Flynn & consulted with a Paediatric dietician to come up with some ideas of how to increase his calories & intake per day. He was prescribed Pediasure to be added into his milk & this was a successful addition to his daily bottles after a week of slowly adding the scoops (due to the vanilla flavour). I was relieved when he took his milk bottles & sometimes even finished them! It was suggested we try making other puree options for him, by pureeing meals prepared for both Orli & Seon & I due to the amount of protein in some of the on-the-shelf pouches. I bought squeeze ’ems (reusable ouches where I could put in my own purees for him to suck on), bought & stuck Peppa Pig & Thomas the Tank stickers on them to excite him about the content. I pureed, it was rejected. I froze, ice cubed chicken, beef & veggies & they were all rejected. I wished he had a PEG or g-tube  because it was meal insurance – what he didn’t have orally, he would still get. It was the insurance I had for his first three months of life when he was being fed nasal-gastrically. (Note: Please know I don’t mean to minimise the function or use of feeding tubes & other long-term issues that feeding tubes create – weaning, oral issues etc – I am grateful for my son not having one, but my anxiety at the time just wanted my son to be fed).

I was exhausted, defeated, frustrated & disheartened. And then I surrended.

I HAD to relinquish my control over his food & his intake. I had to let him be the one to decide what & when & how he was going to eat. It has been one of the hardest things I’ve ever had to do in my whole life & each day was a mental & emotional rollercoaster.

Three months of Flynn only eating at creche, we went to feeding clinic & something clicked inside Flynn’s brain. He started to eat new things & was happy, excited & engaging – he wanted to share the experience with us. At this session, we started using a new technique/strategy on how we spoke & engaged with him during meals & it was a thoroughly positive experience for all. It worked. And it worked because HE had decided he was ready. It worked because the room was free of anxiety & pressure. It worked because I had surrended myself a few weeks prior. And then I didn’t care why it worked – it was working.

He ate a chicken nugget, so that night at dinner it was nuggets. He ate them, I used the techniques learned that morning & I cried tears of joy that whole time. The next night I added chips (fries), which was something I was petrified of re-introducing after many failed attempts previously which included gagging/chocking & vomiting. He ate them. I cried. The next night was fish fingers as they looked similar to nuggets. He ate them. I cried. After months of offering & preparing toast, he started eating it. Meal times were more relaxed. Everyone got excited when he ate something new or tried something new. There were made up songs, dances of joy & lots of high-fives against those little toddler hands.

The next few weeks was researching recipes & preparing food together. We did healthy savoury muffins & vanilla cupcakes. I added quinoa flakes, chia seeds & at times & used veggies I’d never cooked with before. We used our strategies & techniques when he would try them & I’m proud to say that there have been many, many successes.

Even though Floo has started eating, I’ve had to admit I’ve now started worry about the nutritional value & calories content of his meals (will the worry ever be at bay?????). Some parents complain that all their child eats is nuggets & chips & I’m bloody thrilled. I’ve now started using Superfoods for Kidz powders in most of the foods I prepare for Flynn & Orli too. The best thing about the powder is that I can add it to batter, soups, mixtures – anything. I feel better knowing his food is ‘better’ for him & Orli too.

As much as I can report that Flynn’s eating has improved, so has his aim. Food flies across our kitchen, yoghurt is wiped all over the table & his is proud to tell himself off ‘nauttttyyy’ (naughty) when he throws food all over the place. And this brings a whole new level of frustration – but he’s eating & now we’re experiencing what other families experience with babies/toddlers at mealtimes – which is something I’ve been waiting for & hoping for since his feeding issues started at  eight months of age.

Another milestone we’ve experienced, is that we have officially eaten out as a family. We ate at a food court together which is simple & ordinary & something most families take for granted. At two years & three months, we have finally had a meal out together that didn’t include me spoon feeding my son, being stressed about him eating or worrying about him cracking it & refusing his food. I had to pinch myself as this has been something I have wished for for so very long.

I could not have stayed sane during this time had it not been for the love & support shown in the LTBM Australia (Laryngomalacia, Tracheomalacia &/or Bronchomalacia Australia) closed FB group. I’m certainly not alone there when dealing a FTT child, a child with oral aversions or food sensory issues, with the feelings of anger, frustration &/or sadness. I am certainly not alone of feeling robbed. Thank you, to each & every one of you that virtually held my hand & sent hugs during the ‘great food refusal of 2013’.

And to all of you that ‘liked’ or commented on my FB posts, photos & videos of Flynn eating – thank you. You’ve all made this hard (& often lonely) journey easier & it’s our pleasure & honour to share our good news & wins with you all.

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Medico mumbo jumbo

I’m feeling angry, frustrated & a little sad right now. And it’s all because of some snot. Flynny’s snot.
Flynn is still considered ‘failure to thrive’ according to medicos as his weight is not on the graph yet. He’s been consistently sitting on no percentile just following the graphs incline but nowhere near where he’s ‘meant’ to be. In laypersons terms, he’s actually not failing to thrive because he’s doing great. He’s meeting his developmental milestones, alert, engaging & just so beautiful.
He does however have feeding issues. He still has reflux & an extremely sensitive gag reflex & will vomit easily if he feels he needs to. He’s still being fed pureed food as any lumps or grains makes him gag or choke. He’s been assessed by a more than one speech pathologist & they both concluded that his chewing & swallowing is delayed but will improve over time. If my kids have taught me anything is that they’ll do things in their own time when they are good & ready. Orli was developmentally delayed & walked at 25 months, Flynn is still eating pureed foods at 15 months- whatever. I digress.
Three weeks ago I noticed that Flynn was chewing on his puree – he was starting to understand to use his jaw when eating. I had been encouraging this motion by offering him rusks & other dissolvable snacks & he seemed to catch on to what he needed to do. I gave him a little Rafferty’s fruit bar & he ate it pretty well with only a few coughs & no vomit which was fantastic! I felt I was in tune with him & letting him decide when he was ready to progress to this next stage of eating. By feeding himself he can control what goes in his mouth & how much & my gut tells me his chewing & swallowing will improve with him being in the drivers seat.
When Floo gets sick he really struggles eating & drinking which is really hard to witness & manage. Whether or not his tonsils & adenoids are too large I don’t know, but with the build up of mucus at the back of his throat doesn’t leave much room for his food & his sensitive gag reflex goes into overdrive. My maternal & primal instinct to feed my child has to be left by the wayside while we manage to get enough food into him so he doesn’t get hungry whilst not forcing him to eat & then vomit & then be averse to being fed at all. It’s a very slippery slope which I’ve had to climb many times this Winter.
Flynny’s also had four ear infections this Winter (so far) so I got a referral to our ENT for a review on getting grommets. My theory (& yes, I don’t need to be reminded I’m not a doctor) was that if he could better drain the mucus it would help in lessening the likelihood of ear infections & also help to empty the mucus at the back of his throat so he doesn’t have to endure the gagging, chocking & vomiting each meal when he’s unwell. I also wanted the ENT to check his tonsils & adenoids & check if they’re obstructing any pipes & also because Orli had sleep Apnea & had her tonsils & adenoids removed when she was two. And grommets as she has up to 40%  & 25% hearing loss in both ears due to glue ear.
The ENT appointment confirmed minimal hearing loss but not enough to warrant grommets just yet. I explained to the ENT (who was filling in from our actual doctor who was away) that my concern is his gagging & vomiting but she felt we should wait another few months & be reassessed. As much as I was disappointed by her using the hearing test to determine whether or not he neeed grommets (which is correct), I wanted her to also consider his feeding issues when making that decision. I was also sad that he had some hearing loss. Why should he have any hearing loss? I also reminded her that he had Laryngomalacia & didn’t want his breathing to be further restricted by excessive mucus or large tonsils & adenoids. And I’m also fearful that he might aspirate when he’s sick which I want to avoid. I need to point out here that I don’t want my son having surgery if he doesn’t need to – which mother would – but I would very much like for him to not have to struggle breathing & eating.
So today I took Flynn to the GP as he’s been miserable & very snotty the past few days. His feeding has been hard work & he’s projectile vomited at least once every meal. (I am careful not to get upset or worried or jumpy when it happens as I want to ensure he doesn’t get any feeding anxieties by my reactions). I wanted to have his ears checked to see if he had any infections as each time he has been sick this Winter it has led to him having infections. The doctor informed me that his ears were not red nor bulging & suggested I manage his cold with Panadol. I told him that his colds usually lead to ear infections but he was confident that he’d be ok – so was another doctor at that clinic & I was back two days later & left with a script as an ear infection had developed.
I just wish I didn’t have to explain each time why I wanted some action taken. I wish medicos would take on board what I say to them, I wish they would listen, I wish I wouldn’t be disregarded & treated like any other mother & child. We’re not. We’re Yuz & Flynn. And to say Flynn’s medical history has been like any other child is just wrong. I want to medicos to be consistent. Don’t ask me what I’m doing to increase the amount of calories Flynn has each day to try & get him on the graph when you won’t help me to help him to eat, stop refluxing, stop chocking & stop gagging.
I know that Selma accompanies me to my medical appointments, but so does my love & care for my child. I try very hard to keep Selma muted & not impact my decisions when it comes to Flynn, but rather my maternal instincts & the fact that I know my child. For the five minutes you’re in a doctors office & the five minutes the doctor is part of our lives it feels as though we’re all being compartmentalised & pigeon holed based on little information & lack of proof nor experience of having to live with it each day & night. It leaves me feeling as though I am catastrophising, inviting & then emersing myself in drama all while second guessing myself for even doing anything to start with.
I’m not sure what will happen at our next ENT appointment when I ask for a sleep study to be done as Flynn has started snoring & breathing through his mouth when he sleeps. I need to know if he has any Apnea because if so, I want it managed & if not, I will be thrilled & relieved. I just want to help my son & I wish they could all see that without wearing their compartmentalised glasses & limited experience when it comes to LM kids. If it’s not your speciality, then be humble & refer us on. I won’t think any less of you even with all the initials after your name, I will be grateful because it’s shown you that you care & also want to help.
I know I am feeling even more frustrated than usual as I’ve got other things occupying my mind at the moment & also because some of Flynn’s malacia friends are unwell & their mums are having a hard time with their medicos & I’m sure I am wearing some of their frustrations & anger too, so I really needed to get this on paper & try & calm down about the whole thing.
I just wish it didn’t have to be this hard.