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'm a mum to two premature babies both born at 36wks & a PND/PPD/PPA survivor having been admitted to the nuthouse following my daughters birth five years ago. This is my story & journey of both enduring & enjoying motherhood.