Reuben's 6m developmental milestones

Thought I'd make a note of observable behaviour for reference. We haven't really covered this in PT, so I've done a bit of research to name the milestones he's achieved. It's a rewarding exercise seeing what he has achieved, rather than focusing on what he has yet to achieve:

Physical development

• Reu lifts head and chest when placed on stomach for short periods
• Reu straightens legs and kicks in sequence when lying on back
• Reu brings hands to mouth and rests them near face
• Reu takes swipes at dangling objects with hands
• Reu graps and shakes hand toys
• Reu straightens legs and pushes down when legs are placed on a firm surface or pressed
• Reu rolls over, front to back and back to side (working on back to front)
• Reu reaches and grasps with either or both hands, with improving aim
• Reu transfers objects from hand to hand
• Reu uses raking grasp to pick up objects
• Reu lifts legs high while on back
• Reu holds two objects, one in each hand
• Reu creeps on stomach
• Reu sucks either or both his hands, thumbs or fingers
• Reu touches his toes

Visual development

• Reu looks longer at the human face than objects
• Reu tracks moving objects with eyes to midline and prefers moving to stationary objects
• Reu follows familiar objects and people at a short distance
• Reu uses hands and eyes in coordination
• Reu is developing color vision (loves colourful toys)
• Reu's distance vision begining to mature

Receptive/Expressive Language Skills

• Reu smiles when I talk
• Reu giggles when excited
• Reu starting to turn head toward direction of sound
• Reu cries to express wants and needs
• Reu makes sounds for pleasure
• Reu turns head when name is called (!!!)
• Reu experiments with making noises with voice despite trach (blowing raspberries)
  

Socio-Emotional Skills

• Reu develops a social smile (especially with the pretty ladies)
• Reu enjoys playing with other people
• Reu imitates raspberry blowing
• Reu enjoys social and affectionate play
• Reu is becoming interested in mirror images
• Reu responds to other people’s expressions of emotion
• Reu knows difference between family members
• Reu vocalizes, smiles, reaches for familiar person

Thinking/Cognitive Skills

• Reu has longer periods of being alert
• Reu responds to sounds with facial expressions
• Reu shows interest in movement of own hand
• Reu explores objects with hands and (inevitably!) mouth
• Reu reaches for objects that are out of reach
• Reu watches food preparation and other normal routines
• Reu shakes and plays with objects

Reuben Jack Foundation

I need to get things sorted on this. Thanks to everyone who's been asking about it and for your fundraising activities and ideas. So here's a start, an image to represent the Foundation. Reuben's curly toes being given a helping hand by Daddy. It also reminds me of the sign for Help, a fist being lifted by the opposite flat hand.

A huge thank you to Maggie who is in touch with the Charities Aid Foundation for advice.

Congratulations Martin Stitt on Venice!

There are a number of interesting stories going on with friends of ours at the moment, so I thought I'd post another here. Martin Stitt came to visit Reu in hospital on many occasions which was very kind given his commitments, often just popping in on the hoof.

So it's fantastic news today hearing Martin, film director, is having his short film What does your daddy do? premiered at the Venice Film Festival. The 14min film is a "hard-hitting drama about paedophilia and its effect on family life".

http://www.thisislondon.co.uk/film/article-23365929-details/Banker%20cashes%20in%20on%20film%20fame/article.do

Martin moved to LA in July to train at the prestigious American Film Institute after a reconnaissance in April to see whether giving it all up to chase the dream would be a wise thing. When he showed us the short film, I was immediately stunned at how much emotion he so succinctly crammed into 14 minutes. You felt as if you'd been watching a full length movie and the subject matter lay heavy on our hearts.

In April, heavily pregnant, I enjoyed driving him round the hotspots in LA and to the film school and recall watching other short films by graduating students which were presumably being used as a benchmark to illustrate to Martin and other prospective students Look what you can achieve with this film school. And yet Martin and I walked away feeling, hey, he's already streets ahead.


There are a few of us who had bit parts in his movie Nine Days of Hell in 2002. That seems like a long time ago now with everything that's gone on since, and I think for Martin, it must seem like a lifetime ago in terms of what he's achieved since.

Little Reu gets a mention on Martin's blog
http://martin-afi.blogspot.com/2007/08/paradise-for-seven-dollars.html

Congratulations Martin!

With Martin and his wife Julia, visiting from the UK, in the Summer

Happy Thanksgiving Day

Thanksgiving Day is a North American holiday to give thanks, traditionally to God, for the things that one has at the conclusion of the harvest season. It is celebrated on the 4th Thursday of November in a similar fashion to Christmas in the UK, in the company of family with the Thanksgiving Turkey

This year's Thanksgiving is in honour of Reuben, giving thanks for Reuben’s life.

We would also like to give a special thanks to Children's Hospital LA, who so compassionately cared for our boy for 5 months in intensive care. Thanks also to the following for your support at every level and for the wonderful gifts and prayer cards. I swear we have not had to buy a single item of clothing or a toy since Reuben was born! He’s a very lucky boy indeed.

Our families:
My Mum & Dad for your overwhelming support in those first few months and beyond, Joseph for all your very welcome phone calls and for (almost always) managing to track us down, Peter & Nicky for the wonderful gifts and your words of wisdom on the blog and Corrin & Hannah for your prayers for Reuben, Godmother Anne-Marie for your kindness and for being with us in August after the heart surgery and to Aurora for making us smile, Geraldine & Mark for your continued support, Jason's Mum & Dad for always keeping on top of everything Reuben related, Lisa & Paul for being with us during the heart surgery and making us laugh again, Joshua & Mitchell for your lovely messages, Catherine Ann & family, Laura & Michael for your incredible kindness over your Christening gifts for Aidan which inspired Reuben's Foundation, Auntie Angie & John, Cousins Barrie & Karen whom we look forward to spending Thanksgiving with you in LA.

A special thank you to Erica…for being with us during every step of this journey. A wise owl with the patience of a Saint!

Reuben's medical & development team:
Children's Hospital Los Angeles. So many to mention including The Drs: Dr Charlie Golden, Dr Kevin Madden, Dr De Oliveira, Dr Starnes and his team for performing the bypass miracle, Dr Sarah, Dr Del Castillo, Dr Robbie, Dr Deakers, Dr Newth, Dr Claire, Dr Kimani, Dr Platzer, Dr Stanley (from Upminster!). All the NICU nurses, Anne Gleeson for your nursing excellence and Chris. Reu's primary PICU nurses Stephanie & Susan, Rachel, Sanci, Kip, Steve, Manfred, Bill, Alli, Tonette, Rhonda, Jiffy the Trach Nurse. The Respiratory Therapists including: Wayne, Feri, Liz, Rita. LA School District Early Intervention: Michelle & Gwen (for your shoulders!). Physical Therapy: Shelly, Carrie. Occupational Therapy: Jennifer. Home nurses: Norma, Princess Ivy of Swaziland

Thanks to our friends and all their families:
Adrian S, Alexi & Jacob, Amy, Mike & Ben Russo, Amy & the Mighty Max for continually inspiring us, Ann McGoldrick for the Scottish teddy, Anne Pike, Beryl Burles for the lovely clothes, Bethan, Brintons globally for the wonderful gifts, blogging and prayers ("Auntie" Lori, Scottie, Ken & Maxine, Cluer, Michelle, Nora Jones, Diane Williams, Michelle, Carla, Sam, Sanjay & Claire for making the beautiful artwork, Glenna, Phil & Michelle, Jonathan, Neil & Tracy, James & Grace, Keysie (sorry about the football), and all the kind folk in Vegas, Boston, Kennesaw & Kidderminster), Candi & Luke, Cassandra & baby Dylan for your support during the bypass and throughout our months at Childrens, Charlbury & family, Chris & Susannah, Chris & Nate, Christina & Claudio for being such understanding tenants, Claire & Wilkie, Corrie Young, Crystal & Eva Nicole for all your helpful comments on the blog, David & Maryanne, Delina, Dmitri & Margarita, Dr Sam for helping us achieve the miracle of conception, Ellen, Emma & Diddy, Erica & David, family friends Martha and the O'Sheas, St Josephs Church (Frank & Sheila for the mass intention), Lyn & Dennis and all the parishoners), Faning for your information on the hearing aid, Francis (Auntie Angie's friend) for the rosary, Fred & Karin for your friendship, Hannah, Godfather Iain & Carol for the Wolves clothes and mass intention, ivillage friends (PAFI, FI, MAFI, CWM), IIF, Jac, Janelle for all your constructive thoughts and friendship, Janet & Mike Anslow for sharing the FI journey and friendship, John (looking fwd to your visit) & Sarah for the favoured Starman blankie, Julia & Martin, Kristi & John for your visit, shared knowledge and inspiring us with Gracie, Leigh, Lesley & Amelie, Leslie Kauffman, Lisa & Kennedy, Lisa Borre-Avila our IVF nurse, Lisa Olsen, Lorna & John, Lucy for Little Roo for Reu, Maggie & Dougie for the clothes & cute Hamleys teddy, Mary in Charleston, Martin & Julia, Mckenna for all your help at the baby shower, pequena lunatica, Polly for your big support on the blog, Rebecca & Cameron, Saint Monica's Church, Sandrine for your pregnancy support, Sara Whiley, Sarah Stebbings; Sarah & Jeremy for sharing the journey; Sarah, Stuart & Alfie for sharing PAFI and beyond (inc trach), Sharon Bance, Simon & Nicky, Stat & Jo (when will we get to chat with the time difference?), Godmother Steph & Simon for the lovely gifts and support, Tank, Torston, Vanessa & Martin for visiting us in hospital and for your kindness, Vivian, Peter & Angel Carlos, always in our hearts, for your courage and inspiration, Yuka, Scottie & Keith for those landmark visits to Children’s and for everything since.

I sincerely hope I've remembered everyone here, but to those not named personally (let me know please and I'll edit this note!), we are so very grateful.

Let the music begin!

The sign we created for Reuben, a combination of the sign for R and music. Cross your index and 2nd finger on your right hand (the R fingerspelling) and then wave it across your flat left hand (representing music)

Wired for sound

Reuben had his BAHA Softband hearing aid, in lieu of an implant which he'll be able to get at about age 5, fitted last night in Downtown. This was after a mess up with the times earlier (no number of diaries can ensure we actually record nevermind meet all these appointments it seems) and Reuben, at first bemused why he was wearing a headband with balloons, suddenly looked very alert as the device was kicked into action. I'd like to say that my voice was the first he heard (but actually that wouldn't have been in the case in Labour & Delivery anyway), but the technician was doing a lot of explaining about the band and meanwhile, I, holding Reuben, was looking at my little love and feeling equally bemused at his latest bodily accoutrement, bang smack in the middle of his head. And thus, there wasn't much sound coming out of my mouth beyond "Oh".

Reuben quite simply has the Deluxe Package from Children's, every developmental device. This is another one of the specials for us to get used to, to address why its ringing and to work out how on Earth it's going to stay on his head during tummy time and PT. We need to cut it to size as you can see from the picture but wanted to work out where it sits best on his head first. Luckily Michelle and Gwen from LA School District were over this morning and helped out on that front.

That said, this is a huge communicative leap forward for Reuben. We were working out what songs to play in the car on the way home, his first music, Beethoven or The Killers?, but I thought me singing to Reuben would be the best, as I have all along. So let the music begin.

Gwen and Michelle from the LA Schools Early Start Programme signing I Love You to Reuben this morning. Gwen has just come on board our team to focus more on signing and Michelle focuses on oral communication

Mr Bubbles, tired from all this auditory stimulation

Your oral feeding experiences?

Hi, I've just posted a whole catalogue of updates, but specifically wanted to get some information on swallowing:

http://reubenjackdodd.blogspot.com/2007/11/november-medical-news.html

Going to chat to MK later as Lucas is at the same stage, but I've been browsing your blogs for information on swallow studies and oral feeding and was particularly interested in Max's saltine crackers and peanut butter experiences and Eva's KFC! Reu appears to have all the kit to make it work, but needs to learn to coordinate swallowing.

So the decision as to what to do re oral feeding was referred by the OT to Dr Charlie our paediatrician, which is interesting, as I would have thought that would be OT's domain solely, especially since OT witnessed the squash puree. We've therefore walked away from Dr Charlie's with it's ok to try a bit, but I recently bumped into a British speech therapist here in LA and she mentioned a CHARGE kid who died from aspiration pneumonia brought about by oral feeding. He had a Gtube but I understand his parents believed he was swallowing and insisted on oral feeding. Thus, this leaves us a little in the dark re specific objectives and quantities.

It's certainly more difficult to detect swallowing with the trach collar in the way, so the OT showed us how to feel it and I believe we hear it too.

So... any ideas how we should go about this? I tried a teaspoon of the said puree again this morning, just before his 1st feed. Is that about right and should I do the same with each feed?

November medical news

Much has happened in the last two weeks on the medical front so a quick update on each of the disciplines.

Audiology
Reu will get his new BAHA hearing aid today so that's a big communication milestone for us.

Cardiology
Despite his heart rate dipping momentarily into the 40s when he's asleep (it should be 80-120bpm), the tachys and bradys seem to have stabilised. At Friday's visit to Dr Tessler standing in for Dr De Oliviera, he was confident that it wasn't an issue and that, if it weren't for the Pulsoximiter, we wouldn't be aware of the momentary lapse when he's in a deep sleep, something which can happen to all of us. The beta blocker Propranonol which acts to suppress his adrenelin and thus his heart rate (and thereby avoiding the tachycardias of 228bpm), is being weened, although he's still on Lasix a diuretic and Sodium Chloride to counter the effects of the liquid loss. Off to see Dr De Oliviera again today.

Occupational Therapy: Oral feeding
Yesterday's visit to OT at Children's gave Reu his first taste of pureed squash, his first oral feed. He seemed to like the taste OK despite a compromised sense of taste brought on by the missing olfactory nerve. We're pleased he didn't gag or aspirate (we couldn't see it coming out of the trach) and we could actually see him swallow a little. He takes most things in his stride, enjoys new experiences and this was one of those. Little steps every day, a finger dip taste of puree when we start the feeds and that'll be it. Need to catch up with MK whose son Lucas is the same age and also also begun oral feeding as her plan of action seemed more structured. We'll need to decide what works best with our insurance as to whether to continue oral feeding at Children's or via the regional centre with appointments on a weekly basis. In addition, commencing 26 November also on a weekly basis, Reu will develop specific skills for his hands coordination. He's already pretty good on the hand to mouth, ravishing his hands in his mouth at every opportunity. Our former OT and PTs came along to see Reu whilst we were there, the last time being when we was fresh in trach territory.

General paediatrics
Yesterday's visit to Dr Charlie Golden resulted in us scheduling his next bout of immunisations for December. Reu is now 25" in length and weighs 6k which means he is finally approaching the 5 percentile on the growth charts. Always great to see the compassionate Dr Charlie who continues to be pleased with Reu's progress. As Chief Resident, we worked with Dr Charlie both in the NICU and PICU. Along with Carlos, there have been other terribly sad losses in the PICU in recent days, kids we would pass every day on our way to see Reu. I approached the issue of whether we could sleep when Reu slept on those nights, like tonight, when we have no nurse. He said it wouldn't be wise given Reu's still throwing up some of his feeds despite his prescription for antibiotics which he'll take for several months. When he throws up, he can't audibly cry to let you know and we risk him getting aspiration pneumonia via the trach. So Jason has just now gone to bed after 22hrs up. I wonder how we'll cope when he goes back to work when we're not coping now? Jason functions extremely well on no sleep but can't cope without food, whereas I cope without food but am pathetic without sleep. Something's gotta give.

Endocrinology
Up and down, up and down the elevator yesterday trying to get Reu's testosterone shots sorted as October's referral went missing. Making bookings for February, but I'm sincerely hoping it won't be that long to wait especially after reading MK's account of it being a quick prescription and jab to help Lucas. Unbearably frustrating when these referrals go missing and you lose a month. It's so hard to keep track of everything and I hate falling behind.

Physical therapy
A milestone on my birthday last Saturday, I edged Reu onto his stomach on the lawn at the Getty and then, unaided, he raised his head up in prone position and with his eyes open, looking around. 2 sessions of physical therapy last week and our own pilates moves with Reu when we find the time have really helped. It was a huge milestone. He hasn't done it since but we're working on it. He's never been keen on tummy time and I think the Gtube and trach make it a little more difficult anyway. We have physical therapy sessions booked every week at home.

Carrie the PT at home with Reu on the physio ball before the Saturday prone position milestone. As you can see, PT is hard work for Reu

Cranial facial
Appointment booked for 4 December. I guess they'll be looking at the facial muscle and nerves, trying to balance the asymmetry, looking at the dentistry (no signs of teething as yet). I'm not sure to be honest. Despite all the critical medical complexities of CHARGE, I know it's one of the areas that causes great concern because of the social implications of palsy.

Opthalmology
As previously reported, Reu did well in his sight test despite the astigmatism. However, I'd like the cranial facial clinic to look at the spastic entropion, yes another issue, which affects his ability to close his right eye when blinking. We use lubricant which also eases the irritation from the eyelashes. Dr Borchert thinks he may grow out of it which of course would be a blessing, otherwise, I wonder if there's a surgical option?

RSV
Jason has made about 30 phone calls trying to work out who's going to pay for the RSV Synergis shot. It is beyond maddening, it simply makes you quite mad.

Healthcare company
Still awaiting the transfer from Apria to Lifecare for our medical supplies after the abysmal introduction to the former. It's a matter of insurance and waiting for the mystery letter to arrive from Pacificare, following weeks of phone calls, to state that Reu's Durable Medical Equipment cap has been reached for the year and our insurers will no longer finance equipment.

Nursing
Hard to believe, but it's actually gotten worse. Maxim are truly appallingly negligent and are doing nothing whatsover about it. Do we jump from the frying pan into the fire with another agency? One was actually lying horizonally under a throw which I'd use as a sofa protector. Speaking to a nurse about sleeping is the gateway to a no-show the next day. It happened on Saturday night and again last night and given last night's nurse was due to work for 3 nights, I guess that means tonight and tomorrow will be the same. It's an impossible situation because, as Dr Charlie said, we can't sleep whilst Reu is still throwing up some of his feeds.

LA School District
With weekly appointments at home, we'll work on the communication objectives of incorporating sign language into our routine and working with Reu on his hearing aid.

So many disciplines to follow and so many phone calls and appointments...Cardiology, Pulminology, Occupational Therapy, Speech Therapy, Physical Therapy, Endocrinology, General Paediatrics, ENT, General Surgery for the Gtube, Audiology, Urology, Opthalmology, Cranial Facial. In the World of CHARGE, I think Reu got hit pretty badly medically when I make comparisons to help me learn more about each of the challenges. But he has an easy going personality which makes me think, He's no trouble. Ironically that really.

Happy birthday mama Catherine (photos to follow)

Yes, my first birthday as a Mummy, spent at the Getty. A lovely relaxing morning at home, Reu napping beside me. Reu astounded me. I gently rolled him over for some tummy time whilst sitting on the Getty lawn and he raised his head in prone position, and looked around, eyes open, no tears! This is a first and marks a greater degree of head control. Couldn't get the camera there in time but everyone around picnicking could hear my excitement. He very much enjoyed the nude sculptures too, quite mesmerised by them and as for autumnal trees from the vista of the BabyBjorn...he's in heaven! Dinner at PF Changs and the waitress bought me desert, so touched she was by Reuben. He's very easy to take out for a night and in a bustling restaurant, you can just about disguise the sound of the suction machine with the clink of silverware and crystal, drrrrrrrrrrrrrrrrrrrr.

Mass of the Angels for Carlos

Today: As promised, today was truly a Mass of the Angels and a beautiful celebration of Carlos's life. It is hard to imagine that a stranger's words could somehow lift us from the grief which we have all so bitterly felt ourselves at the pit of this week, yet the Irish priest's unwavering faith and conviction only served to re-ignite ours and through all our tears, gave such comfort as to make those tears bittersweet.

Do not pray for the soul of Carlos, for he is already Saint Carlos and is happy. Pray instead for his family and friends who sadly mourn his loss.

Peter's mum so bravely spoke of the journey the family have taken in her heartfelt poem about the seemingly lost hopes of your son becoming a man, yet in her words, recalling his journey, Carlos became that man. The priest echoed this wondrous sentiment:

Carlos lived the life he was to lead, he served his full purpose

before being reunited with God.

Our paths with the family crossed on 12 July and for 7 weeks in the PICU, and beyond onto the floor, our friendship blossomed under such shared adversity that if it weren't for this blog and my ageing memories, I would find it difficult to recall it all, as thankfully, time can heal such wounds. Yet I do recall, with a smile now, looking through the windows into Carlos's room next door, either his Dad watching the baseball, or Mum staying on top of her business on her Dell and beside them, Carlos's shock of raven hair and long black lashes and how each day's furtive steps into each other's lives moved us ever closer. A smile through the glass became a chat outside the rooms, became words of comfort, became a hug, became a shoulder to cry on in moments of utter despair.

When you experience life in intensive care, jointly fighting your baby's corner, making their decisions, giving them their voice, forcing action when the direction is uncertain, preparing for procedures and surgeries, the intensity of shared emotions is so profound. And yet the person to support me so greatly during those bleak days, was, ironically, Vivian, a Mum going through her own silent anguish.

Vivian and Peter's generosity of heart to Reuben continues to be an inspiration, and offering their support to us even today is truly humbling. I admire them immensely. And today, we felt so welcomed into the fold of their bountifully extended family, that we went from the reception to their warm and comforting home.

Carlos will always be remembered, kept alive in our hearts for all eternity. I know at times, the grief will re-emerge and be so raw for all, so I leave here the priest's lasting words which, in the Church, found light in the darkest depths:

We know where Carlos is. He is playing with the Angels,

and what a beautiful way that is to remember him by.

* * *

I want too to include here the lullaby which Mum would sing to Reuben and which today has felt so poignant to me.

Guardian angel, From heaven so bright,

Watching beside me, To lead me aright,

Fold thy wings round me, O guard me with love,

Softly sing songs to me, Of heav'n above.
Beautiful angel, My guardian so mild,

Tenderly guide me, For I am thy child.
Angel so holy! Whom God sends to me,

Sinful and lowly, My guardian to be;

Wilt thou not cherish, The child of thy care?

Let me not perish, My trust is thy pray'r.
Beautiful angel, My guardian so mild,

Tenderly guide me, For I am thy child,

O may I never Forget thou art near:

But keep me ever In love and in fear.

Waking or sleeping, In labor and rest,

In thy sweet keeping My life shall be blest.
Beautiful angel, My guardian so mild,

Tenderly guide me, For I am thy child,

* * *

Our little friend, Carlos, was united with God on Monday, a happy and brave little angel.

Vivian recalled how, when being wheeled into cardio surgery, he was smiling and laughing as if he knew it was his time, as if he was saying goodbye.

Our hearts break for the loss of their truly beautiful, long lashed little boy who fought so long and hard and yet through this, gave his mum and dad such hope and strength that was a joy to witness. The Solodkin family, Vivian and Peter and their daughter Angela, have shown more courage than I can ever describe and in their unison, they devoted their all to their little boy. Their grief must be unfathomable.

Carlos will always be a part of our lives. We will tell Reuben all about him, how he fought so bravely alongside him, how Viv and I would dream of the times our boys would play. I still have those memories of our boys playing together in my head, and nothing will take that away. They are so real in my head as if to say those moments really happened. Carlos will live on in our hearts and minds.

We visited a priest yesterday to arrange for a Mass to be said for his family and to ask the questions which we know are impossible to answer, the why?

The Mass of the Angels will be held at the Sacred Heart Church, Ventura, at 10am on Friday. I know the family made many friends at Children's and I promised to let you know the details. I will bring with us all your messages of condolence to the family.

Sacrament of the Annointing of the Sick for Reuben

Reuben received the Sacrament of the Annointing of the Sick at Saint Monica's Church, Santa Monica. It's a very beautiful church. Reu was enthralled with the stained glass windows in particular.

Hands & feet

Sleeping toes

Lord of the Ring

Ten little pinkies

Lord of the Ring Part II

Afternoon nap with Daddy

Dancing fingers

Mama's hand in your eye!

Hand to mouth

Whilst I'm sitting up at night, I take photos of Reuben sleeping, hands and feet. You may see the snaps better by clicking on them. Makes me feel like I've achieved something today!

* * *

A triple night nurse let down from Maxim and a gillionth call into Apria to deliver medical supplies, it's not that hard, surely. You take the order, you fulfill, you deliver. Apparently not. You take the order, we repeat the call every 2 days to make the same order. The nurses, well, 2 nights on the trot no nurse and then tonight, our good nurse is booked to go elsewhere so we have a stand in and that means another hour explaining everything here. I've let Yuka and Scottie down again as they were due to visit us this evening. We have a dire need to sleep and everything is beyond in turmoil here. Dear CHARGEr mum and dads, how on Earth do you cope?

PS Jason's just asked. Do you think these cathetars (8 French, mind) are as French as French fries?

Happy 6th month birthday, Preston Swann (Kristi & John's boy)

Have a beautiful day sweet Preston. Here you are at Mummy's office on Halloween. My how you've grown little koala!

with love
Catherine, Jason and Reuben x

Prayers & thoughts for Carlos & Dylan

Please keep two of Reuben's little friends and their families in your thoughts and/or prayers.

Carlos's surgery is now on Monday 12 November.

Saying cheerio to Vivian on the floor on our discharge day, and our sons actually meeting for the first time after many weeks in adjacent rooms in the PICU

Carlos is 9 months old, was born with partial DiGeorge Syndrome, and was admitted to the PICU next door to Reuben on the same day, 12 July. The nurses would think of the boys as two peas in the pod, both having heart defects and Gtubes, and both syndromatic. Carlos was transferred to the floor after 6 weeks and since then has been on the cusp of discharge, but sadly one infection after another has delayed his homecoming and thus the decision was made to bring forward his cardio bypass. On Monday 12th, and after 2 postponements brought on by infection, sweet Carlos is scheduled to undergo his cardio bypass to fix multiple congenital heart defects. Please keep Carlos in your thoughts for Monday. Vivian has been a great on the ground support to me and as with Cassandra, I always admired her brave face and beaming smile. We have shared a great deal of ups and downs together, our boys intubated for weeks, the trials of infections and postponement. My heart repeatedly goes out to Vivian and Peter, who despite the impossibly long journey during this admission, manage a happy home life with their 2 year old daughter, whilst taking turns to spend the day with Carlos. I'm pleased to say that Dr Starnes who operated on Reuben will also be fixing Carlos's heart. I have the greatest empathy for what they will be going through tonight and tomorrow and yet have the greatest faith in Dr Starnes. I pray that they will find a peaceful place in their hearts to get them through the trauma of major surgery and that Carlos' health will dramatically improve after the surgery, allowing family life to continue for them, where it should do, together at home.

Dylan and Cassandra in the hospital garden on Halloween

Dylan is 8 months old and was born prematurely at 29 weeks, thereafter spending 6 months in the NICU. After posting happy photos of Cassandra and Dylan on Halloween, I'm sorry to say that Dylan is now back on the floor at Children's with a urinary tract infection. During this admission, he may also stay in for a colostomy bag reversal operation, and mum Cassandra is naturally worried as Dylan has already undergone 5 surgeries in his short life with many complications. I pray for a speedy recovery for Dylan and that Cassandra can continue to enjoy days at home with Dylan in the near future.

Happy birthday cousin Hannah!!!

Dear Hannah, my girl cousin!!!

I hope you had a beautiful and happy birthday. I know Mum and Dad always do something very special for you on your birthdays (says my mummy) and so I'd love to hear what you got up to, the size of your birthday cake, did you have a sleepover with friends?

Also, how tall are you now? How much do you weigh? Everybody wants to know these things about me so I think it's only fair for me to ask you as well.

Be happy and if you're doing something for Bonfire Night, keep extra specially safe.

With love and a very big dribbly kiss
Your cousin, Reuben x

PS Please can you send me a nice new photo of you so that mummy can put it up on my blog and then everyone will be able to see what you look like and say, Ah, isn't she sweet? Where did she get that blonde hair from? as they do with me although actually, I think everyone thinks my hair is ginger so maybe they don't say Where did you get that blonde hair from, but instead say, Where did you get that ginger bonce hair from? And what about a lovely photo of Corrin too?

Happy birthday Auntie Geraldine, 37 day!!!

Wishing you a very happy 37th birthday Geraldine!

Reuben has a new trick, blowing raspberries through his lips, exciting himself silly with the thrill of it and I don't doubt, listening to the sounds echoing through his head as he does so. So from Reuben, he sends you a big sucky, sucky sound and, if you're very lucky, a smile and a chuckle at the end of it.

with love
Catherine, Jason & Reuben

Happy 6 month birthday Reuben! A photo a day

Coming soon.. the photographic journey. No nurse again tonight so that'll give me some time to work on it whilst I sit up with Reuben.

Happy 6th month birthday our beautiful sweet boy!

When I first planned on photographing our baby every day for the first year, it was with plans of delicately capturing imperceptible growth, minute changes on a daily basis, which somehow culminate in a wonderful change by the end of 365 days. How does a baby grow? I would capture the first smile, the curl of the toes, the flick of the eyelashes. Each of the milestones at the appropriate time.

That was the plan. Yet "this life is more than just a read through" and since things never quite work out the way we anticipate in life, the reality of this project has been that I've captured a brave, sweet boy who really puts me to shame. It's turned into a journal of intense medical intervention and looking back now through 6 months, it's hard to remember that it was 7 weeks in the NICU, 3 weeks home, 3 months in the PICU and 2 weeks home. Those endless days in hospital blur into one long day (the happiest worst days of our lives) and if it weren't for the fact that much of what happened is recorded here, I would find it difficult to believe, let alone, remember it all.

If you'd like to take the photographic journey, a photo a day, I'll stick it up here very soon.