Doudous Progress 4 months

I hope everyone had a wonderful Christmas, we did.
Here is Doudou on the day after Christmas morning, spoiled by family and friends looking pretty tired.

Where is Doudou ?

He had his 4 month immunisation today he screamed for a few seconds then he was fine.
He has been a bit sleepy and I am keeping an eye on his temperature, finger crossed he will be ok.

I just wrote this it out for a forum and thought I would share it here.

Age: He was 4 months on Saturday

Sleeping: He sleeps between every feed anywhere between 40mins to 1.5hr during the day and a big sleep from about 8-9 til 5am.

Feeding: He has 5 to 6 bottles of 180mls a day, some bottles he doesn't finish. He is now on Elecare which is prescription only the paed thought he may have a cows milk intolerance hence the reflux. He is a new boy on this formula no more screaming just happy pretty much all the time. He is also on Losec for his reflux the combination has made a huge difference.

Weight: He was weighed today with all his clothes and weighs 7kgs. The GP measured him but I forgot to see how long he was, last measurements a month ago he was 59cm.

Routine: He wakes at 5am, feeds, sometimes I can get him back down for another hour or so but most of the time this is the time he his most awake much to his mums delight, Not! He loves to have a chat and laugh at this time he tells us his little stories, has a giggle and a play with his Daddy in bed. Then through out the day he feeds, then he sits in his bouncer (I try and keep him upright after a feed for the reflux) for a while either plays with his Daddy or comes and puts clothes on the line or hangs out in the kitchen with me, then he has some tummy time and plays on his mat for a while until he gets grumpy. I have had to give him a nurse and sing him a lullaby to fall asleep but the last few days I have put him in his cot with his dummy, he whinges a bit I have to settle him a few times but then he falls asleep. His last feed is about 7pm and he goes down from about 8-9pm till 5am occasionally he may wake at 3am but he goes down quite quickly after a feed at that time. We try and get out at least every second day, shopping or the park or visiting family routine changes but he is quite social and loves getting out. He is out of the capsule and now in a rear facing seat the capsule was pointless now because he is just too heavy for me to carry. Oh he gets a bath and a story time somewhere in that routine too.

Teeth: No teeth yet but is constantly putting his hands in his mouth. His gums look a little raised so perhaps something may come through soon.

Milestones: he isn't rolling over yet. He hates tummy time and gets very frustrated with it apparently a lot reflux babies do. He has been blowing raspberries for a few weeks and has discovered his tongue. I love seeing his little personality coming through he is just gorgeous we are totally in love with him.

Point of Interest: DS has a flat head on one side, he always looked towards the window since he was a newborn. We rotated the bassinet but he was persistent. Anyway he now constantly favours one side even when he is looking around most likely because he has some stiffness in his neck. The Paed suggested we see a physio who did a home visit last week she gave me some exercises to do with him and suggested we move a few things around in his room. We will see her again in a couple of weeks to see his progress.

Merry Christmas, Buon Natale, Joyeux Noel

Merry Christmas, Buon Natale, Joyeux Noel and if you are not into Christmas I wish you a happy holiday!

I hope that all your wishes come true.
Love Vee Max & Doudou xxx

Just tired

I am so tired, tired of life. No, not that tired. Tired of the day to day, it is getting a little easier now with Doudou being a lot more settled. The psychologist asked me that the other day, whether I had thought of taking my own life. No way! I have too much to live for! I have a gorgeous son and a loving husband that need me. My niece tried and thankfully failed to take her life a few years back, I know what it can do to a family and loved ones. It was a terrible time. We worked too hard to get our little dream I ain't going anywhere!

Usually I look forward to the end of the year and want to rush it along, because I am so sick of the year that had just gone and hoped for a new year and a fresh start.... but I am not going to rush the new year in. Why ? Because I am grateful for every day I have with Max and Doudou, our little family. Max will be reaching another one of his goals this Christmas and I couldn't be happier, we will have our first Christmas as a family and I am hoping for many, many more. Precious.

Max is just feeling so down. He told me yesterday that he wasn't living he was just existing. He can't do the things he enjoys anymore, he can't enjoy the outdoors, going out and taking photos on our nature walks, he can't enjoy his food, he loved his food. He still does love the smell of everything his head says one thing but his stomach say something else. He is getting thinner and thinner and becoming more and more immobile and less stable on his feet. He fell down the steps at the front of our house the other night and put a hole in the wall. He was quite sore and bruised but luckily he didn't break any bones! I am looking forward to Christmas it will be spent with my family, but most of all I look forward to our little family time in the morning just me, Max and Doudou. Our family.

First Santa Photo

Isn't he the best Santa ? Doudou loved him, he has smiles for everyone.
Look at his little hand on his huge finger, he looks so tiny.

Dealing with it....

I saw the clinical psychologist today, she was ok. She listened and was quite empathetic, she couldn't believe what I had been through and what I was dealing with. When I recount my life, I too sometimes don't believe the shit I have been through, the shit we have been through. I learned that what I am dealing with is "anticipatory grief" I didn't realise there was a name for it. I cried pretty much through the whole session. She suggested I go on antidepressants and see her again in the new year. It's not that I don't want to take AD's, I have nothing against them it's just that last time I took them, they made me feel really nauseas and changed about 3 different tablets only to find the one that didn't make me feel sick made feel really flat, emotionless, no ups and no downs, just numb. I hated feeling that way. I have decided I will give them another go, but I can't afford to feel sick. I am my husbands carer and my sons carer, I can't get sick!

I grieve the things that should be, the things that I dreamed of and know they will never be. It's summer now we should be enjoying the outdoors, the simple things like going for a walk in the park as a family, Doudou in the pram and Max and I side by side. We should be going camping, swimming in the surf like we love to do. Max no longer has the strength to challenge a wave, swim under, he would be knocked off his feet in a second. I miss our long strong hugs, I would break his ribs if I did that now. I gave him a little hug tonight and I said I want more of these please, he said no I am ugly. He is worried that I feel all his cancer bumps all over his back and body when I give him a hug. I do feel them but I choose to ignore them I just want hold him like I used to.

Max told me he had a dream the other day that he was holding Doudou up in the air, like any playful father does. Just a simple thing and he struggles to do. I saw my brother in law do that exact thing with Doudou after he told me and I wanted him to stop, it wasn't fair that he could do it so easily and Max had to struggle holding up his own son. He watches Doudou playing on his play mat and with his mind he wants to throw himself on the floor and play with his son but his body just wouldn't participate, he would never be able to get back up from the floor. It's just not fair.

Halfway through writing this post I had to tend to Max who had his head in the toilet, he hadn't vomited for ages. But he had a very bad coughing fit so it may have triggered it. He is now trying to watch a DVD and keeps having to pause it to continue with his coughing fit. He seems to be getting them quite often now which means that most likely his lung lesions are getting worse.

Max had his radiotherapy on Thursday, I am hoping and praying that it will help enough with his pain so that he is a bit more mobile and that the side affects don't knock him about like they did last time. It usually takes a couple of weeks before there are any signs of side affects or improvement. Fingers crossed.

He has blue eyes just like his Daddy.

"He looks just like his father."
"He is looking more and more like Max."
"I can't quite work out who he looks like."
"He has blue eyes just like his Daddy."
"He looks a bit like your father-in-law." (Argh!)
"He really does look like Max."
"I can't believe how much he looks like Max."
"He look so much like you."
"He looks just like you when you were a baby."

A LOT of people say that he looks like Max, and some say he looks like me. If you compare baby photos he does look like me and he does actually look like Max when he was a baby too. But most of all he looks like Doudou. We have both learned to either ignore the comments or just smile and agree when they say he looks like Max, it's just easier that way. We do laugh about it later though. Through out the donor process I was concerned about how using a donor would affect us. Thinking Max wouldn't bond with him and I wasn't really sure about my feelings either, even though I was totally ok with it through the process and discussed the issue a million times but it was not my reality yet and once our baby was in my arms I could have totally freaked out! But it wasn't like that at all... as soon as he was born we both fell so in love with our little guy and love him more and more each day.

I haven't thought about the donor side of things much since he was born, not because I am denying it but because it hasn't bothered me at all. He is our gorgeous healthy son and that is all that matters and also that Max is so madly in love with him helps too. I am sure as Doudou gets older and it will be a time to bring up the discussion and having to tell him he is donor conceived it will be in my thoughts constantly. I do get upset thinking about the future and having tell Doudou because Max and I were always in this together . We made the decision of using a donor together we discussed when and how we would tell our future child, we are a team and it's upsetting that Max may not be around for one of the most important part of Doudous life and I will be doing it alone.

Laughing

He makes me smile every day.

Update on my boys * With update

Doudou is doing so much better after seeing the pediatrician. He still has some reflux but he is not screaming in pain, just your usual I have some wind, I am hungry or I am tired cry. He is such a happy boy, he makes me smile constantly. Except in the early morning when I want to sleep but he is not so keen on sleeping. I feel like I can go out comfortably now knowing that he will not have a screaming episode in the shopping centre where people look at me as if to say what the hell are you doing to your child, pinching him ?

The pediatrician put him on some reflux medications and he is now on EliCare formula. It took a little while for him to get used it but he is ok with it now unlike the medication which I am struggling to get into him and I am sure he is only getting about half the dose that he ought to hence why he still has some reflux. The new formula stinks, especially when he does a vomit yuck! which reminds me he did a vomit in our bed this morning I better go and change the sheets before I go and hit it. He is no longer constipated either, I don't need to hold his knees to his tummy just to get a poo out. Why is that when you have baby quite often conversation turns to poo ?

Max is still trying to get his pain under control. When he is in constant pain he becomes quite immobile and because he basically sits all day on the couch and does nothing but go to the microwave to heat up his wheat heat bag and go to the toilet (unless we have an outing or appointment to get to and even then he is not very mobile) well he is going to become weak. He has lost pretty much all his muscles not to mention his fat. He saw his pallative Dr today and he told him he needs to up his pain meds he needs to manage his pain better.

We had a couple of emotional days whilst we were away prior to the rest of the family arriving. The house we stayed in had a full length mirror in the bathroom, we don't have a full length mirror at home. ( Yes I know I lamented when I was pregnant because I wanted to see my belly, but we never got one) Well Max saw himself for the first time, he didn't recognise himself, he really has become skin and bones compared to what he was. His eyes have become dark and sunken. He has absolutley no bum, he had the sexiest ass, now its gone. He finds it uncomfortable to sit for long periods or anything that is a tad too hard because he has no fat on it anymore. I caught him crying quietly. He is getting tired of constantly finding new cancer bumps on his body. He is getting tired of being in constant pain. A couple weeks ago, I took a tour of his body and felt all his cancers every single one of them, I couldn't believe how many there where. It just makes me so upset and I hate that his in so much pain. Tomorrow he has an appointment to see the oncologist to possibly get some more radiotherapy done this time on his lower back which is giving him a lot of pain which shoots down his leg. I hate this fucking cancer !

Update-
Max is booked in on Thursday for more Radiotherapy. He had his mapping done today, a few nurses drawing squares on his back and his bum. It will be one dose this time but a heavier dose than the last lot. I hope it doesn't knock him about as bad as the last lot did!

Time out

We are just back from our week away that was kindly donated to us. We had a great time. I finally went for a swim it was so invigorating. We fished and actually caught fish. We went out on few boats and cruised the lakes, one of the boats is donated by the WMI and they were lovely enough to take us out for a few hours. We relaxed. My Mum came out of hospital so my mother and father managed to come up and spend 5 days away with us. It was a nice way for my Mum to recoup and also got to spend lots of time with Doudou. He loved it and lapped up all the extra attention from his grandparents and his aunt and uncle. Max did well with the outings as long as we had somewhere for him to sit. It was a nice change of scenery for all of us and just what we needed.

Doudou turned 3 months old whilst we were away and he had many firsts. He went to the beach and put his feet in the sand and water, he hated it! It got quite windy at some stage and he hated that even more! I hope he takes a liking to the beach eventually. He went on the boat, he loved cruising on the lake and even steered the boat!


A mob of kangaroos on the side of the road. This area is renown for its Koalas yet we didn't see any but we saw kangaroos.

Our fishing spot.

Relaxing on the boat.

Steering the boat.

Feet in the sand. You can't see because his hat is falling off but he is crying under there.

Our swimming spot.

Pelicans on the Lake.

R.I.P. MOOSH

My beautiful cat was put down this evening.
He was the best cat in the world.
You can read about him in my old Show and Tell post.
We will miss you Moosh. xx

Life in points

I have so many posts I would like to write but I just never get the time or energy to gather my thoughts. So this is another post in points.

-My mother has gone into hospital again today and will remain on IV antibiotics for ten days, she is still battling her lung infection. Hopefully it will kick it in the butt and she will come out just in time to come away on holidays with us.

-My cat is not well and I don't think he is going to make it. It is just so upsetting.

-Doudou has been struggling with pain of constipation and reflux. It has been an endless battle finding a formula that "works" for him with no success so far. Fortunately I managed to get an appointment with a paedictrian that specialises in allergies and food intolerance's tomorrow, we are very lucky to get in to see her as she is booked out until February. It breaks my heart to see him scream in pain. I really wish breast feeding had worked for us.

-My girly bits are fine, apparently. They will go back to normal with time after giving birth.

-Max keeps finding new tumours and his pain just keeps shifting from one spot to another. He has only had his head in the toilet a few times but he is still weening himself off the Dexa.

-I have finally made an appointment to see a psychologist after we get back from our holiday, because some days are just way too challenging.

Where is he ?

Where is Max's Dad, my father in law ? Who knows? who cares? He has just disappeared. Oh not from his home but from our lives. Totally gone, no sign of communication what so ever. Before Doudou was born things where already fragile with Max and his Dad, we never knew why. They hadn't spoken for months prior and we hadn't seen him for almost a year. It bugged the hell out of me, I wanted it to be all ok...I remember writing and being so upset over it.....but today I don't give a shit. He is no father.

Before Doudou was born Max was insisting he wouldn't be telling his father of his arrival but the day Doudou was born he was just so elated and so proud he decided to call his father and tell him of the wonderful news. He now wishes he hadn't. Max told me his father would have been a lot more excited if we had just bought a puppy dog. Disappointed. The next day was Max's birthday, so his father asked Max if he could see him on his birthday but Max declined because he was going to be at the hospital and wanted to celebrate his birthday with his wife and his new son. Why would he want to spend it with him, after not seeing his sick son for over a year and why not call him prior why use Max's phone call ?
And that was the last we have heard from him. A while ago Max wanted to write a letter to him telling him how he really felt and that he didn't want him to be at is funeral and not even to think about writing a eulogy for him, but he decided against it as it was just going to bring up all these unwanted emotions and his father just isn't worth Max's precious energy.
He can fuck off for I care, he is not wanted in our lives. He is no father, he is no grandfather.

Peabrain

They have gone...the in-laws have gone! phew! They are lovely and all and I really shouldn't deny them their time with Max and Doudou but gosh it was just too much. Looking after them and Doudou and Max. I have been just so exhausted and haven't been able to think straight. Max needs more and more care these days, he needs help getting dressed and putting his shoes on etc. I organise and fill his pill box now because he just can't think straight when he is on all those drugs. After seeing the palliative care Dr on Thursday he has upped his pain meds which zonks him out even more. He decided they will keep the radiotherapy up his sleeve for now and see if he can manage the pain better on the drugs. Oh we got the appointment day wrong, his appointment was meant to be on the Wednesday and not Thursday. I obviously didn't etch that date deep enough into my little brain amongst everything else that has been happening. What a peabrain and I don't even have heavy duty pain drugs as my excuse. Anyway we were lucky he could get to see another Dr.

Sunday was the first day in a long time we had nothing on, no Dr's appointments, no nurses home visits, no psychologist home visits, no lunch dates, no dinner dates, no sight seeing, no one dropping things off, no one popping over. It was just the 3 of us at home, our little family. We all stayed in our pjs all day, it was perfect!

Now all the main events are over with I need to focus on myself a little. Since giving birth I have had problems with my girly bits well the plumbing I wont go into detail just yet but I am going to see my GP tomorrow to see what the story is.

We are going away in a couple of weeks. WMRF have offered us accommodation in a holiday house up the coast for a week. How lovely is that! It is a week so the 3 of us will go up on our own for a couple of days and we have extended it to my my sister her hubby and my Mum and Dad to come up for the rest of the week. So we will have full time baby sitters....hahaha Nah just kidding but I am hoping that Max and I will get some couple time and my Mum and sister can enjoy Doudou time. I am sure that will be no problem. I can' wait, I soooo need a holiday !

A Beautiful Day

Doudous Christening was a huge success yesterday, it was a beautiful special day. He was just amazing he gave every one lots of smiles and he lapped up all the attention loving every cuddle and kiss....unlike the day before where he was screaming in pain. I can't work out what it is whether it is his silent reflux or tummy pain but I anticipated a nightmare of a day if it was going to be like that. But we were truly blessed with a little angel there was no screaming and no stress just lots of smiles for all. He looked gorgeous in his little Christening outfit, his Godparents spoiled him rotten and the rest of the family did too. It was big day and we are all recovering today.


Max's mother and stepfather are really high maintenance. They expect to be served upon all the time even to get a glass of water. It has been a very tiring couple of weeks, I have discovered some patience I don't think I had before. It takes so long trying to get three disabled grown ups and a baby out of the car never mind getting to any destination...argh! They leave on the weekend and even Max felt bad saying so but he is looking forward to them leaving too so we can have some family time. Max was sick the weeks leading up to their arrival and finally he is feeling a little better and we can't enjoy our precious time together. The morning after I wrote the post that Max had stopped the Dexamethazone and his nausea was at bay he had his head in the toilet bowl again. So he has commenced his Dex cycle again, he will be seeing the palliative Dr on Thursday and will look into possibly getting some more radio done as he is still in a lot pain.