H A P P Y Turkey Day from the Nguyen Family 🦃 This was taken at the end of a very long day. Lucy isn’t feeling well and was upset we interrupted her sweeping duties and Lily was passed out because she barely slept all day....Matt and I are so blessed and thankful for our crazy little family. I love them all to pieces ❤️ @littlelucy_james .
Lulu’s first year of life was a little rough. She had had a lot of respiratory issues and a rare case of seizures called #infantilespasms . The last year and a half, by contrast, have been illness-free and, consequently, full of new milestones. I’m so especially thankful this Thanksgiving for just how normal our lives now are!
#tbt I remember the day he was born like yesterday. Normally the birth of your new baby is supposed to be a happy celebrated day but for me it wasn't exactly like that. I remember as soon as I was handed Jagger I looked at him & all I could think was wow he looks like he has DS." Everyone else played it off like his eyes were just swollen. But I couldn't shake the thought I could see it in his eyes. I felt like I was over analyzing everything, the way the nurses were looking at him, i started googling traits of DS & looking to see if any other traits he had were consistent w/ DS. I was driving myself crazy. My doctor wasn't able to be there for the delivery it was another doctor that ended up delivering Jagger so the next day my actual doctor came to visit me in the hospital and sat on my bed & I looked at her & said "do you think my he has DS or do you think his eyes are just swollen?" & she said "well it has been said by a few that they thought that he might have DS." My heart just dropped it truely felt like a nightmare, how could this be. She had a look over him & noticed a singular palm crease which is a trait of DS so she called for bloodwork & from there i had to wait for results.They sent in a social worker to speak to me she gave me a phamplet about DS and had a chat w/ me briefly. I broke down after that sobbing i didnt think i could handle taking care of someone who may require a lifetime of help. I had terrible thoughts the first couple days i couldnt connect w/ my baby like i did with my other 2 it was an awful feeling i just wanted out of that hospital i had so much anxiety. A week later i got a phone call from my dr. & she confirmed that in fact he did have T21.I remember crying all night to the point of a migrain & waking up the next morning like a light switch went off, I had a change of ❤ about everything. I was going to face this head on & be his biggest supporter/advocate. I have some mom guilt for ever feeling that way as to me he is the most amazing little guy ever but its life its raw its real & now he gives me purpose! #downsyndromeawareness#downsyndrome#trisomy21#t21#changingthefaceofbeauty#dsdn#nothingdownaboutit#ds#theluckyfew
Langweilig wird es den Kindern von Pontypandy nie. Ob Geburtstagsfeier, Übernachtungsparty oder Gokartrennen – bei Sarah, James, Norman und Mandy ist immer etwas los! Aber leider läuft nur selten alles nach Plan. Und so muss Feuerwehrmann Sam mit seinem Team zu einigen kniffligen Rettungsaktionen ausrücken, damit am Ende alle Bewohner von Pontpandy ruhig schlafen können. https://www.kleine-helden24.de/feuerwehrmann-sam-gutenachtgeschichten-vorgestellt/
Der Tier Schlafanzug Overalls Jumpsuits aus Flannel begleitet herrlich bequem in den Schlaf .
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Vielseitig für alle Jahreszeiten!
Außergewöhnliches Geschenk für jeden Anlass, zB. #Kinder#Strampler https://www.xn--besondere-bedrfnisse-1ec.de/kuschel-strampelanzug-fuer-jungen-und-maedchen-einhorn/
Back in January Oscar had an operation to remove Cholesteatoma (a growth in his ear) and today he had another operation to check to see if it had grown back. They said if it hadn’t grown back it’d be a 40 minute procedure but if it had, it’d take about 2 hours.
Just over 4 hours later 😳 he came out of surgery...
His ENT surgeon said that the good news was, that the Cholesteatoma hadn’t grown back in the left ear... in fact it had all healed so well, that they had to drill through the mastoid bone again (which they didn’t expect to do as they thought it’d still be healing, so one of the reasons it took longer/he looks like Mr Bump here) but on taking a good look, all looked clear and C’Toma free 👍🏻
However...I’d asked them to check that the grommet in his right ear was still in place and as it wasn't, they fitted him with another grommet...only when they did, they found Cholesteatoma had started spreading in THAT ear!!!!!!!!!☹️😩☹️
He said that we’re to come back to clinic in 2 weeks time and that he’s going to try and take the sponge packing out then (without a GA - ummmm yeah good luck with that 😬😳) then they think they’ll do another surgery to remove it in the new ear, early next year 😞
It wasn’t the news we were hoping for. It means more check ups and more procedures which are likely to be ongoing now for years BUT do you know what, Oz is so strong (stronger than me) and I couldn’t have been prouder of him today ~
He hates having any obs done (Blood pressure, temperature, SATS etc). He refuses to wear a gown or travel down to theatre on a bed. Instead he walked down to surgery - the bed, the nurse, the hospital porter and I in hot pursuit behind him. He strutted in to the holding area where a whole team of nurses, theatre staff, anaesthetists were stood around and in true Oz style, he totally worked the room, shouting “Hiya” to them all. I mean could he have been less fussed? ❤️ ~
Sometimes though, life royally sucks arse hey 🙄☹️
Pic - Oscar after surgery, nailing a packet of raisins but obvs fairly over it all by this point. Bandage off in 24 hours 👍🏻