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Please help baby Iyla and her family!

  • 10/08/23 Starship Hospital Auckland

      10 August 2023
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    She's out of theatre & apparently it was pretty tiring for both her father & herself 🤦🤣

    It's all good news though. Looking at being on the daily meds for a further 6 weeks and then she should be able to come off them ❤️

    The good news received today for this throat mass, has caused relief and a positive feeling going forward for the temporal mass (checked at MRI scan end of this month). So, home again tomorrow :) a few appointments for the rest of the month, locally at the GP etc and the MRI is either the 24th or 28th.

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  • Starship Hospital 10th August update

      10 August 2023
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    10/08/23 Starship Hospital Auckland.

    After arriving safely in Auckland yesterday afternoon, settled in to Ronald M house for the night, presented at Starship this morning ready for ENT Surgery at 12:30, or at least by 1:30. She has just now (2:15 ish) gone in. Expecting good news, but I guess like most things, anything is possible.

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  • Update! 9 Aug 2023

      9 August 2023
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    This little goober is off to Auckland this morning with her folks. This time around, other than them being a little nervous (but not admitting it) about getting stuck up there, they're ready to go. Quick stop in Christchurch for about an hour or so today, so that's not too bad and then on Friday it's a direct flight home, yay ❤️

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  • Update 26th July

      26 July 2023
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    She's doing amazing! Getting really chatty and even starting to giggle now. She's had a little try of some farex (🤮). Her sleep is a bit up n down. Sleeps well during the day but not so amazing at night.

    She had another doctor check in yesterday and they were happy with her weight and with her.

    Today she had the dietitian who noted she's lost weight since yesterdays doc visit, but I feel that there will always be discrepancies between all the different scales personally.

    2 weeks and they're off to Auckland for ENT theatre and hoping to get a letter to say referral received or the actual appointment for the MRI to check out the new brain mass soon 🤞

    Her parents are doing amazing :) and we will have another scratchie board tomorrow too :)

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  • Medical check up

      21 July 2023
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    First medical check since leaving hospital.

    Gp had not received any contact from anywhere, no notes, no letter explaining continued care while at home or what medication she was on or anything.

    Apparently she's lost a little weight, unsure why, she eats like a horse these days 🤣

    She's also apparently on the wrong dose of her medication. It should be less than what they were told to give her but it's ok, she's not overdosing, as if she was her heart rate would be very slow and it's not, it's fine. So not going to change the dose for now.

    A little over 2 weeks and back too starship they go.

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  • Flights booked to Starship

      20 July 2023
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    July 19 2023

    Spent yesterday sorting out the starship trip. Everything all confirmed. They've been informed it'll be a minimum 2 nights away at this stage.

    Iyla is such a happy baby. Well, most of the time 😂 due for her first check by Monday since being home 💖

    Fundraising update: Lotto ball is drawn tonight. Winners will be announced along with the latest scratchie board winners. 4 more scratchie boards to go and then we will be putting a hold on them until after her next lot of tests (theatre for her throat mass and MRI results for the new temporal mass) but her givealittle page will remain open :) link in the album comments :) thank you

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  • Massive thank you to everyone

      18 July 2023
    Posted by: Kahn Kennard

    We are home. Still a long way to go and although it's good to be home the new temporal mass they found before we left hospital is scary esp as we know what we went through with the throat one and they can grow so fast so hoping her daily meds work on it too. But anyway a huge thank you to everyone that has donated supported and helped us, It's so appreciated. To everyone we met in starship. See you again in 3 weeks :) thank you again everyone

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  • Saturday 15th July update

      15 July 2023
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    Not much of an update today. She's drinking well and sleeping very well 🤣💖

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  • Iyla update 13 July

      13 July 2023

    Back in Dunedin. Survived her 8hour cross country adventure yesterday with her mum and dad just fine :)

    Still no idea how long they will be in Dunedin for but do have ENT theatre date at starship confirmed for August 10th.

    Weigh in at Dunedin shows a slight weight loss again, but no biggy.

    Still has a feeding tube because unfortunately she struggles to drink from a bottle. Her parents were wondering if it's due to the feeding tube and the size of the tumor in her throat, but no one knows for sure.

    She's doing well and her parents are nailing the hospital life just fine.

    ***Also need to send a shout out (even though they won't see it) to the Ronald McDonald house, and the nurses, doctors and other amazing staff and (no longer) strangers who were there for Kahn and LaToya and tended to Iyla during their stay in Auckland. You all made it less anxiety inducing and they will be forever grateful to you all, same shout out to those in Dunedin and the one doctor at Kew who decided enough was enough and arranged them going to Dunedin***

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  • Back in the South Island!

      13 July 2023
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    Sorry for not updating yesterday.

    They made it guys 😍

    New home away from home. Hello Dunedin hospital.

    It was a marathon day for this week family as they flew to Dunedin via lengthy stop overs. They did not have a nurse with them but they did amazingly!

    No idea how long they will be living in Dunedin for so all financial help is so crucial as Kahn and LaToya navigate the next part of this journey.

    Thank you so much for all your help to date. Please keep sharing this page as every dollar counts.

    Thank you.

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  • Tues 11th July update!

      11 July 2023
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    Guys ..kids fly to their home away from home tomorrow (that's Dunedin hospital btw and where they'll be for a while)..bubby is on regular medication and still has feeding tube etc. A direct flight Auck to Dunedin would take about 2hrs, but instead they get to spend 8hrs taxi, flights, stop over, flight and taxi to get from one hospital to another :( but hey at least they're gonna be back in the south island making it easier for family to visit 🥰

    If any fam or friends plan on chilling at Christchurch airport tomorrow mid arvo, they'll be there for a few hrs. They'll have Iyla so you can meet her lol

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  • Update Mon 10th July.

      10 July 2023
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    Ready to head South & happy about it...or so you thought...nope, cancel that, unfortunately not happening today anymore. Maybe tomorrow.

    So all that one can do is...go back to sleep! 😭 And this was after they had been told this morning that Kahn would need to pay for and find his own way to Dunedin from Auckland.

    At least Dunedin hospital is ready for them when they do make it back though.

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  • Friday 7th July Update

      7 July 2023
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    Baby update ❤️

    Guys she's doing amazing, and they're coming home! Well not home home lol but they get transferred south next week. Iyla will be on 2hourly medication, with day leave (an hour at a time basically) for a while and so they will be in Dunedin for an unknown time frame. They have to go back to starship hospital in 4 weeks time, which also impacts Kahn being able to return to work as expected in 3.5wks.

    It is understood she will be on medication for 4-6 months.

    So, to help with the additional costs, such as travel to and from Dunedin and all the other associated costs with not being in Invercargill but still having general living expenses and bills on top of these extra costs and stresses, we are starting some additional fundraising, with the first being a scratchie board, which will be dropped at Robin Hood Milkbar (thanks Andrea) over the weekend, and when I figure it out, a lotto bonus ball one. The givealittle page will also remain open.

    The givealittle will go towards paying for the flights etc to starship next month and money they have borrowed to stay afloat in Auckland, as they will have to pay first but can claim back later from the national travel scheme. Please share her givealittle if you don't mind. She's doing amazing but it is far from over yet.

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  • Iyla update Tues 4th July

      4 July 2023
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    Baby update: sorry we didn't do one yesterday, had a few appointments for my husband, so didn't get the chance to get on.

    The ENT theatre check she was supposed to get done tomorrow has been pushed back to Thursday or Friday but she is good! Perhaps a lil salty with a bit of an attitude, not sleeping as well as she could be, but all in all, she's good :) she nearly weighs 12 pounds now, which is such a relief after the weight loss. Her blood sugars are good. Her hair is getting redder like her dad's ❤️ shes tired 🤣 her parents may have got a little told off for both staying with her last night, when she wouldn't settle, but rules are rules hehe

    We all have our fingers crossed for good results from ENT later in the week and they'll get transferred to Dunedin hospital next week 🤞🤞 closer to home so better for everyone.

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  • Sunday 2nd July update

      2 July 2023
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    Baby update ❤️

    Little bit unsettled late yesterday and last night, so they upped her morphine, otherwise she is doing very well. She has been moved out of picu. Hoping to recheck the mass next Weds, and if all going well, transferring to Dunedin hospital sometime the following week. Can't transfer to kew as she needs to be monitored and the mass checked regularly. So looks like won't be home for a little while yet, but they'll be closer ❤️

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  • Thank you

      2 July 2023
    Posted by: Kahn Kennard

    We just want to thank everyone for their support, messages of love, and donations. We have had people we have never met extend a hand and although we are to shy to reply, knowing that we aren't alone is a blessing. This is one of the hardest journeys we have had to do, and it's far from over yet, but we just wanted to thank you all. Kahn and Toya

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    • 02/07/2023 by Karen Cook

      So privileged to be walking this journey with you both from way down here. Keep strong you two, you are both doing so well! ❤️

  • Progress for this homesick little family

      1 July 2023
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    Today's update is one less tube in her nose, eyes still a bit sensitive and all going well she will get moved out of PICU soon 🤞

    Still no idea on when they will get transferred south again so just taking it one day at a time and being extremely thankful for all the support and help and the fact she hasn't gone backwards since making a huge leap forward yesterday ❤️

    She will be on daily meds twice a day for a very long time and require regular check ups etc, but thats nothing in comparison to the past few weeks for this lil family. It's far from over but the future is definitely brighter. They are so home sick but at least it's not seeming like they'll be away months anymore.

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  • Update from Tess. Friday 30th June

      30 June 2023

    Here it is guys. The update we've all been waiting on and all been needing!! They finally got to hold their baby for the first time in over 2 weeks 😭

    The meds appear to be working and the mass is beginning to shrink but will continue to be monitored for a while up there. No clue when they'll be home, but right now, today is a relief, and the photos and videos speak volumes 💕

    We didn't do an update yesterday because they found a lump in her tummy they wanted to investigate further, so we were waiting on the results from that. They now can't find it, so 🤷

    I'm so proud of these kids, and they are definitely raising a warrior 💪

    Please copy the link to see the cutest videos of Iyla and proud parents, Kahn and LaToya.

    https://m.facebook.com/story.php?story_fbid=pfbid0WcPyUPWKdrkxD3BNmYgoBq8R2xPYur5aFGSxim5bMiDouGEWx2i4Rac15Uhc72Vcl&id=1013869672&mibextid=Nif5oz

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  • Update from Tess Thurday 29th

      29 June 2023

    Morning all,

    bubby is next on list for theatre, so if everyone could hope for good news for the kids for today that would be awesome, thank you. I'll update when I hear from them.

    Please share this givealittle page. They were expected to be there, like Dunedin said, for a week, this weekend it's 2 weeks and they have been pre warned they're looking at a month plus :(

    If you pray, then please pray for good news and things to get better for them soon so they can come home.

    Thank you everyone for your support, love and immense kindness.

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  • Stay in Auckland extended!

      28 June 2023
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    Here is an update from Tess:

    Baby update :)

    She heads into ENT theatre tomorrow to check if meds are working, although so far indications are that they arent, looking at reducing sedation due to the long term impacts and she has been sedated to long, and at this stage they will likely be there for a month or more.

    P.S Photo from happier times

    P.P.S Kahn said please send nachos haha.

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  • Another complication.

      27 June 2023
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    From Tess:

    Another update: one of her lungs has collapsed. Please send best wishes that this is the last hurdle for them, coz, sorry for the language, but #*@# this month!

    (Can I add....please, if you pray, pray for Iyla and her family.❤️)

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  • Tuesday 27th Update from Tess

      27 June 2023

    Baby update :)

    She had a restless night, they gave her more fentanyl and sedation, her oxygen was low but they have corrected it now, she has Rhino virus and another virus but can’t remember name & a urine infection. They are going to talk to her parents today about a plan.

    A huge thank you to everyone who has supported us in every way. It is much appreciated.❤️

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  • A post to acknowledge Kahn and LaToya

      26 June 2023
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    This has been written by Tess. Too good not to share here. Keep strong Kahn and LaToya, you're both incredible parents.❤️

    Kahn and LaToya, I just want to acknowledge you both, because just like when a mum gives birth, often the mum herself is forgotten.

    Every day we check in to see how you are doing, but not before we check in on bubs. Every day we update on bubs, because obviously we want and need to know how she is doing! But with everything going on it makes it all too easy to forget about the parents themselves.

    Dealing with everything happening around you, navigating a new city, a new hospital, more doctors and nurses while trying to stay strong for your baby and each other.

    I just want to remind you that you are amazing. You are doing amazing and the strength you have found to keep going and not fall apart is amazing.

    This would be difficult enough for any parent, but you are young parents and LaToya, you have had to endure the judgement of being a very young mum, doubting yourself, losing friends, knowing that some society is looking at you sideways, but you both have shown a strength beyond your years through all this, that some parents would never do.

    I love you and I hope you can hold your baby girl for cuddles soon!

    Family is everything, and knowing that you have each other and can rely on each other even at life's worst is a treasure to hold forever ❤️

    -Tess (Mum)

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  • Monday 26th Update from Tess

      26 June 2023
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    Just a small update for all today. Iyla is running a fever so they have started her on antibiotics and began tests to see the cause, otherwise all is well & the kids are amazing.

    Today's picture is from prior to all this, simply because I can ❤️

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  • DIAGNOSIS!

      26 June 2023
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    Update from Tess:

    The nurses have put on 6 hours of Disney lullabies for babies for her to listen too ❤️

    We have a diagnosis: a rather large subglottic hemangiomas that is in a rather complex place.

    The plan: to try and shrink it so she can breathe on her own :) may or may not work. May need surgery later. ENT will check her Wednesday and hopefully remove breathing tubes. She will need monitoring for a while as they need to know she can breathe freely on her own before they can consider letting them come home, and if there is even a slight chance of breathing difficulties they will definitely not send her home.

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  • Update from Tess, Kahn's Mum❤️

      25 June 2023
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    Update:

    Apologies for the delay in an update, was hoping to have one with the MRI results but they don't have those yet at this stage, but this update is direct from her mumma ❤️

    They are doing xray to see if her o2 tube may need to move up a little, they are giving her less o2 so she's breathing more on her own, prepping her for when it comes out, they have started milk feeds every 2 hours at small amounts right now but will go up in amount until shes having full feeds again. She had a great night just moves alot when she wakes.

    They also want to say a huge thank you to everyone for the messages of support, the donations and offers of help. Although they don't have their immediate families there with them, knowing how much everyone is thinking of them and offering support means so much and makes the journey a little less daunting. So thank you everyone ❤️

    And side note: they're definitely small town folk, because the second update was...you can make noodles at the dairy 😱🤣

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    • 25/06/2023 by Linda

      Thinking of you all, sending lots of Aroha 🥰🥰 Linda ❤️🙏

  • Baby Iyla

      24 June 2023
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    Picture posted with permission. 😢

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  • Kahn and LaToya arrive at the hospital

      24 June 2023
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    Having arrived safely and been accepted into Ronald McDonald house, Kahn and LaToya await Iyla's return from an MRI.

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