#hieawareness

2,055 posts

21 days. 3 weeks. 504 hours. I can not wait to bring you homeโค #hieawareness #littlesquishy #nicu
Hey Family....A few extra prayers would be appreciated for our little guy. I am thankful that through all Aiden has gone through and what he faces, he does not get sick regularly or how most would expect. However, from time to time something will rear its ugly head, but with quick action that starts with an albuterol treatment, we seem to resolve it. Last night was hard for him without much solid rest (mama is tired as well), as he would wake crying, almost choking on what appeared to be extra mucus and gagging as if he was trying to cough something up and clear his throat. Back to school and being around more little people or even adjusting to the new place could be the culprit, but weโ€™re hoping it passes quickly. Aiden is now resting following his albuterol treatment, which I am planning for him to do all morning ๐Ÿ™๐Ÿฝ. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Phoenix Diaries - 22 August Today has been a day of napping!! It feels like that's all I've done!! Mummy is in for a rough ride tonight!! It was Uncle Chrissie's turn at babysitting today, and can you guess what I did with him? SLEPT ๐Ÿคฃ I did have some play time with Nanny and gave her lots of smiles. I'm getting so much better at it now ๐Ÿ˜„ Sometimes I even look as if I'm laughing, just without any noise ๐Ÿคทโ€โ™‚๏ธ To try and entice me awake Mummy got the musical instruments out. I enjoyed shaking my rattle. It's one that I wear like a puppet so I can still make a noise even though I can't grab hold of things for long ๐Ÿ‘ I'm just out of the bath. I know it's a little late but I was getting rather worked up so Mummy thought it might help me relax ๐Ÿ›€ She's such a clever Mummy because it did the trick!! Bubble baths and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #zbd #teamzebedee
Sheโ€™s been particularly chatty today. ๐Ÿ˜๐Ÿฅฐ โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข #hie #hopeforhie #hieawareness
Phoenix Diaries - 21 August Yay, today my Squiggle finally arrived ๐ŸŽ‰ It's an activity system that my Physio sought out for me. It has lots of different parts which velcro onto a mat. There are soooo many different combinations for it, and each one will help me to achieve my different goals. They are the same goals as all babies (tummy time, laying, rolling, sitting) but I need a little extra support both physically and in training my brain to do certain movements. Sue is coming out to show Mummy some positions but I've had a little sit on it already ๐Ÿ˜ I've had a very busy day of playing with Mummy. I have a new toy which I've been mesmerised with all day ๐Ÿ‘ I've also been very inquisitive today- I kept trying to steal one of my syringes from Mummy. In the end she let me hold it, and HOLD it is what I did ๐Ÿ˜ I kept my hand clasped and moved my arm up and down without letting go ๐Ÿ’ช Squiggles and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #zbd #teamzebedee
Phoenix Diaries - 20 August Great news- I've put weight on ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰ I now weight 10lb 1oz. I'm so excited that I've finally got the 10lb mark ๐Ÿ˜ I'm not back on my centile yet but I haven't dropped any further and Mummy is confident that she can get me back where I need to be! I just wish this pesky thrush would go. It's seemed worse again today and I have a very sore bottom again ๐Ÿ˜ช Whilst I was at the weigh in clinic I had a try at sitting in a bumbo seat. My OT is going to recommend a good chair that will support me to sit when I start weaning but Mummy spotted it and thought she'd test it out. I really liked it and sat up beautifully in it ๐Ÿ’œ My back is getting quite strong now ๐Ÿ’ช I even did some more sitting by myself today! What a successful day ๐Ÿ˜ Chunky monkey kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #zbd #teamzebedee @preemieworld @preemiehood @peeps.hie @hopeforhie
Phoenix Diaries - 19 August I'm getting so good at rolling now!! Last night Mummy laid me down in bed and I had a good wriggle again. I rolled onto my tummy, let out two big trumps then FELL TO SLEEP!! Mummy was a little nervous but I was so comfortable that she didn't want to move me. She trusted that I could move myself back (which I can) and left me to sleep. It was glorious and I slept for 3 hours ๐Ÿ˜ I had a pretty good sleep for the rest of the night too, waking every couple of hours but sleeping after a feed ๐Ÿ‘ Today I've had a play date with some of my Numpette cousins. We had lots of cuddles and I enjoyed watching them all playing. I was in such a lovely mood all afternoon ๐Ÿงก I've eaten well again today but haven't latched on for as long as usual. My thrush still hasn't gone and it's giving me a nasty taste in my mouth ๐Ÿ˜ช It's weigh in day tomorrow. Wish me luck ๐Ÿคž Belly sleeps and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears
When we purchased our first home in Vegas, we had chinese food on the floor. Seven years later we moved into our townhome, we had chinese food on the floor. So now, this has become our family tradition and last night, we had chinese food on the floor. The only difference this time...Aiden was able to join in. I have to tell you, that this picture is by no means staged, this kiddo is really eating MY food with chopsticks. Aiden is so independent, strong-willed and really takes my food. He would not allow me to feed him with a fork or really feed him at all. However, I have to say I was completely impressed at how well he handheld the chopsticks and was able to feed himself with minimum struggle. This kiddo amazes me everyday. The ongoing joke is that Aiden can eat better with chopsticks than his big brother Q (16yrs), who eats his chinese food with a fork ๐Ÿคฃ. With our love, my family sincerely thanks each of you for your continued love, prayers, kind words and encouragement, we are indeed blessed. #FirstMealAtHome and we are so thankful! . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Phoenix Diaries - 18 August 2019 What a busy day I've had today. It all started with some rolling in bed. Since my first roll Mummy has tried to coax me to do it again. Silly Mummy, surely she knows by now that I don't do things on demand! In fact, my favourite time to roll is when I need to trump. Mummy thinks I'm very clever, that when I'm in pain I have the instinct to help myself ๐Ÿ˜ In the afternoon Daddy needed my help at work again but he failed to mention that I had to travel in the car for 40 minutes to get there! I cried and attempted to scratch myself the whole way!!! Mummy tried to put me down for a nap once we got there, but I was far too bright eyed for that. I made my self busy by taking phone calls and sitting in Daddy's big chair. On the way back home I was a little bit more settled, Mummy gave me a comforter to hold and I enjoyed snuggling it. I even fell asleep but soon remembered I was in my pesky car seat and woke back up again!!! It's progress nevertheless ๐Ÿ’ช We had a quick pit stop to see uncle Vee (and meet even more new friends) then it was off home to finally get some sleep. My biggest news of the day, however, is that Olivia gave birth to a beautiful baby girl this morning- so I have another best friend ๐Ÿ‘ฆ๐Ÿ‘ง I can't wait to meet her. Rolls and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #pierothwines @pierothwines @maisonmesamis
This girl ๐Ÿคฉ๐Ÿคฉ. Prop sitting for multiple minutes at a time! She is getting so so strong! Just a few months ago, she could barely lift her arms while being wholly supported sitting and now she can lift her arms and PLAY while sitting with no support (albeit only for a short while). โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข โ€ข #hie #hopeforhie #hieawareness
Phoenix Diaries - 17 August 2019 Well, after a pretty unsettled day I didn't sleep to badly last night. I woke up approximately every 2 hours but soon settled back to sleep. I had around 7 hours sleep in total ๐Ÿ‘ I woke up feeling happy but decided to fight my morning nap and became quite grizzly because of it! I finally dozed off and had a glorious 2 hour nap and stayed in a lovely mood for the rest of the day ๐Ÿ˜„ I'm finally back to being happy without having to be held too. Mummy laid me down on my mat earlier and popped into the kitchen. When she came back I'd almost wriggled off the mat ๐Ÿ˜ฑ I just wanted to explore a little and found my own way to do so. Who says you have to crawl to be able to move? ๐Ÿคทโ€โ™‚๏ธ I'm happy to be a back shuffler ๐Ÿคฃ Another positive fr today is that I've been feeding LOTS which Mummy is very pleased about. I'm still a little uncomfortable after each feed but have managed to keep everything down and my poops are much less mucousy ๐Ÿ‘ Daddy suprised me by coming home early and bringing Fe with him, so we've had a family filled afternoon/evening. I do love family time ๐Ÿ‘‘๐Ÿ‘๐ŸŸ๐Ÿ‘Œ Happy kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #instafamily #instadad #zbd #teamzebedee #phoenixdiaries
Some people arenโ€™t as enthralled as others by this evenings reading of #anatbanielmethod but @lynneylaw is intrigued and was already crying by the end of page 1. ๐Ÿ˜ข๐Ÿ˜ข #kidsbeyondlimits
The best squirrel in the whole entire world. Havenโ€™t given an update on Lumens progress in a while, so thought I would. We had his consultant appointment back in June and they were really happy with him and didnโ€™t want to see him again for another 6 months. He also had his developmental assessment the week after and they were happy but feel his neck muscles are a bit weak for his age, so have to try and do a lot of tummy time. Unfortunately he still has the 2 hernias in his groin after his GP didnโ€™t refer him for the operation, so that causes him a lot of pain which results in tummy time being uncomfortable ๐Ÿ˜ฃ Weโ€™re waiting for an appointment for him to have a second MRI in Bristol and have another appointment with them in October. His SALT lady (speech and language) saw him the other day and said his feeding is textbook perfect, which is amazing as he struggled so much to start with and seeing as they wanted him to come home tube fed he has done amazing. The next thing will be to see how he handles weaning, as we would like to do BLW but that might not be an option for him. We are meeting with the RUH next week to find out the results of the investigation into the lead up to his birth and if it couldโ€™ve been prevented. Iโ€™m not sure how to feel about that just yet and Iโ€™m still unsure if I want to take legal action. Iโ€™ve also been diagnosed with PTSD because of the whole experience and am currently having therapy for it. Itโ€™s still a waiting game for everything with Lumen and I find myself watching every movement he makes far more than I did with the other children, but everyday I still am so grateful for him just being here and how much support we got through that bloody awful time. . . . #baby #babyboy #babys #babylove #nicubaby #nicu #hie #hieawareness #babylove #ptsd #traumaticbirth #mother #motherhood #motherandson #4monthsold #lumen #mum #mummy #mumlife #mumof4 #mumofboys #mom #mommy #momlife #instamum #babiesofinstagram
Phoenix Diaries - 14 August 2019 As predicted I did not sleep well at all last night. I just had far too much sleep in the day and wasn't at all tired. This morning I was wide awake nice and early so I ventured out to see my Numpettes. They were all so excited to see me but after a sleepless night I was super grumpy and cried until Mummy took me back home. I've been out of sorts all day- tired but fighting sleep and hungry but refusing to feed. Mummy thought a nice bath would relax me so she set it up with lots of bubbles and put my twinkling star light on. If I could spend all day in a bath I would be so happy ๐Ÿ˜ Mummy even started feeding me in the bath but was worried that I was getting cold so we jumped out. That was the moment all hell broke loose and I cried non stop for an hour ๐Ÿ˜ญ Mummy eventually got me to sleep (after a frantic call to Daddy) and when I woke up I was in a much better mood. Mummy however was still tired, so she stayed laying down and sat me on her tummy so we could chat. She always judges herself when I have a bad day so I thought I'd remind her just how kick a** I am by sitting up ALL BY MYSELF ๐Ÿ’ช I reached for my toes, straightened my back and stayed sitting without having to be supported by Mummy at all. She suddenly forgot how tired she was, and cried happy tears. I hope she remembers that I'm strong because she has made me that way โญ Daddy came home nice and early and we've been having some nice relaxing family time ๐Ÿงก Hugs and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #zbd #teamzebedee #firstsit #smallbutmighty
Phoenix Diaries - 13 August 2019 Those immunisations have completely wiped me out. Last night I had another 9 hours sleep (waking once). I woke up at 8am and was napping again by 9am and I've pretty much slept all day...... Until now ๐Ÿ˜‚ Now I'm wide awake, just in time for bed!! Aunty Charlotte had her first babysitting duty today, she gives the best cuddles so I was excited to spend time with her. She brought Beth, Mol and Chester with her and we played board games together (when I wasn't napping). Whilst Mummy was out, I had another try at bottle feeding with Chester. He was so kind to help me but I just didn't like it!!I wonder if I ever will? This afternoon, Mummy decided not to take me to be weighed. I have my Peadiatric Review on Thursday and they weigh me there so she didn't see the point in disturbing me today. Off to read some stories now in bed now, Naps and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears
F A M I L Y T A K E-O V E R . . By C H E S T E R . . So today I did hold Phoenix and fed him for the first time. He wasn't happy and I think he wanted the boobie ๐Ÿ˜and then I played cards with him. I do not think he was to impressed Then I played disney with him. โค๏ธ You Lord P ๐Ÿท . . #familyiseverything #cousinlove #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears
Hey Family....School days are back and our little guy is feeling the change!! After school, Aiden is starving so the routine is for him to have a smoothie in the car, which you can see remnants all over his face, shirt & car seat straps. By the time I made my way to the front and started to to adjust the radio settings, I asked Aiden if he wanted to listen to music. I turned around and he was out ๐Ÿ˜ด . This summer he refused to take naps, Aiden stopped napping 100%, but it looks like we now have a solution ๐Ÿคฃ๐Ÿคฃ. #Back2School . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Phoenix Diaries - 12 August 2019 Guess who had 9 hours sleep last night and only woke up once ๐Ÿ’โ€โ™‚๏ธ Needless to say I woke up feeling fresssh as a daisy and so did Mummy and Daddy. My morning was spent playing and reading stories. I also fed lots and seem to be back into a good rhythm. The new thrush gel is really helping ๐Ÿ˜ƒ In the afternoon we walked all the way to the Doctor's and I stayed in my buggy the whole way. I still had some niggles but for the most part I stayed calm ๐Ÿ‘ I was brave having my last set of injections, despite them making my leg bleed lots. I cried but soon stopped when Mummy gave me a cuddle. Mummy knew I'd need some tlc afterwards so I went in my sling, snuggled up close to her and fell into a lovely sleep. I'm really hoping the injections don't make me poorly because I've felt much better today. Weigh in day tomorrow- I think Mummy is nervous to see if I've started to climb back up to the 0.4th centile but I think I need a little more time to catch up as I've still been under weather. Brave kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #zebedeemanagement #teamzebedee
Checking out dinner at our local ๐Ÿ‘Œ๐Ÿผ๐Ÿ˜โค๏ธ in his @fireflybyleckey GoTo Seat. #cpwarrior #strongronnie #senparenting #gotoseat #publunch #epilepsybaby #hopeforHIE #HIEawareness #HIEawareness
Phoenix Diaries - 9 August 2019 Today, I had a super chilled day. After all the upset of yesterday afternoon Mummy wanted to have a day at home ๐Ÿ˜ It started with a nice relaxing bubble bath- my favourite!! Afterwards I had lots of playing time both with Mummy and on my own. Up until today I've only felt content on my own for around 5 minutes at a time, but today I chilled for about 15 minutes ๐Ÿ‘ I enjoyed looking around the room and playing with a ribbon toy that Mummy made for me ๐ŸŽ—๏ธ This evening uncle Chrissie came to visit and I showed him how good I am at rolling on to my side. Speaking of rolling, last night I was having tummy trouble again so to try and relieve it myself, I rolled from my back onto my side then onto my tummy ๐Ÿ˜ฎ Then I pushed up from my legs, stuck my bum in the air and let out 2 mighty big trumps ๐Ÿ’จ before rolling all the way onto my other side ๐Ÿ’ช Mummy watched me in a state of shock, so to impress her even more I stuck my thumb into my mouth TWICE!! I didn't keep it in for long but I've been trying to do it since my NICU days and this is the closest I've got!!! Back to this evening and I'm still awake despite Mummy trying to get me to sleep for the past 2 and a half hours ๐Ÿ˜ฎ I did trick her for a little while- I fell to sleep on Aunty Sheena so she put me to bed, but I thought that was far too easy for Mummy and I decided to wake up 10 minutes later ๐Ÿ˜‚ Maybe one day I'll crack this sleeping malarky but as tired as Mummy and Daddy are they wouldn't change me for the world and are so thankful that they get to have sleepless nights ๐Ÿงก Tired eyes and kisses Lord Phoenix ๐Ÿ‘Œ #preemie #prembaby #hiewarrior #hieawareness #deafawareness #hearingloss #disabilityawareness #childdisability #survivor #instababy #instamum #nicubaby #myfirstyears #teamzebedee #zebedeemanagement
She loves this toy so much. Itโ€™s so cute ๐Ÿ˜‚ #hie #hopeforhie #hieawareness
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