Happy CMV awareness month! A progress update.

Happy June everybody! We're so happy that summer is finally with us, let's hope that the weather begins to realise summers here soon too! In case you weren't aware (most of you probably are, I bang on about it enough!) June is CMV awareness month, so if you have me on Facebook, consider this your warning, I will be posting a LOT about CMV this month!

So it's been a while, so long in fact that I just had to have a sneaky read of my last post to see where I I left you (blogger of the year award anyone?), and man has it been a busy couple of months. I think I ended my last post with something along the lines of "fingers crossed we're not at hospital for a long time now!". Yeah, well, that didn't pan out at all! Anna had different ideas! 3 days after her discharge from Russell's Hall, she was readmitted to Birmingham Children's. They vomiting continued, the tube coming out, she was just desperately unhappy, as were we. We were kept in for 16 days while the doctors and nurses tried to get her sickness under control, but it was to no avail. They repeated the barium swallow which gave back some utterly surprising results - no reflux!! I didn't know whether to laugh or cry. The doctors decided despite this, it was definitely reflux we were dealing with. We were discharged with the vomiting still no better, but she has gradually improved. We still have a few vomits a week, but they are nowhere near as bad as they were previously! We have also recently met Anna's surgeon who will be performing the gastrostomy. We are currently trialling her on another new medication 4 times a day to see whether it is her brain sending sickness signals, or whether it is the reflux. We're seeing him and his team  again at the end of June where they will decide whether she needs the fundoplication in addition to the gastrostomy. With any luck, the surgery will be happening in 8-10 weeks time. Things are a little easier at home now that I have been trained in passing the NG tube, no more late night or weekend visits to hospital so the tube can be repassed, wahoo! We just can't wait until we don't have to put her through it at all anymore, her cries at tube changing time are heartbreaking.

Now on to a few positives. Anna has been offered a place at nursery! We are all so excited. It is a funded place for 2 afternoons a week with a one on one nursery nurse. It'll mean I get 3 hours to spend with Leo, and I will have 3 hours to do some housework or food shopping without children crying or screaming at me, absolute bliss! It will be so good for Anna too - she absolutely adores other children, and being in a nursery environment will bring her on so much. We're just so grateful we have such fantastic professionals involved in Anna's care who genuinely want her to reach her full potential. We've also started her Team Around the Child meetings recently. This is basically when we get together with everybody taking care of Anna at a meeting, not even 2 years old and she's holding her own meetings, get that!! They are a fantastic way of us all coming together and making a list of targets as a whole instead of stumbling through and forgetting who said what and when - it simplifies her care plan for all involved. We'll soon be part of a switch toy library, which is something Anna is particularly excelling in at the minute. She's also taken a shine to sensory games on the iPad - it's times like these I'm glad daddy is an IT buff after all! We're also being referred to Acorns children's hospice. When this was first mentioned to us I recoiled in horror. I was terrified about what being referred to a hospice meant for Anna. But I know now that they do much more than provide end of life care. They hold activities for not only poorly children with life limiting conditions, but their siblings too. They can offer us respite when we need a bit of time alone or with Leo. Overall it's a great opportunity for us a family and we'd be silly to turn down their involvement!

So I think that's it for now. I will probably be positing again some time within the month - as I said it is CMV awareness month after all, and that is ultimately what we're aiming to do!

Another hospital stay!

Hi everyone! Back again after yet another hospital stay, they may as well keep  a room with our name on the door, I have a feeling these little hospital holidays are going to become a regular thing!

So as you will have all read in my last post, Anna is now NG fed. We were encouraged to feed her orally for 15 minutes , with an NG top up over the hour. The only problem is, Anna has become so averse to feeding orally that pretty much everything  is passing through the tube. For the first week or two after our discharge from BCH, she took really well to NG feeding. She was suddenly gaining weight beautifully, had more energy and was generally even happier than she was before.
But on the 2nd March she started vomiting. This happened to coincide with a medication change. Anna had been on ranitidine since last summer to control her reflux, however her speech and language therapist and I became concerned that she was still showing very little interest in solid food. Worried that we are going to miss the window for weaning, Anna's consultant had switched her medication to omeprazole, hoping for a positive result on the weaning front. What we got, unfortunately, was the opposite. At first I thought it could just be her body adjusting to the new medication, so decided to give it a week or two to settle. But gradually the vomiting was getting worse. We were changing the bed sheets 3 times a day, getting through 6 sleepsuits for Anna daily, every morning and night I was scrubbing sick from the living room rug and the sofas. The one day she ended up having 5 baths because she was covered head to toe in vomit. And we're not just talking a little bit of spit up, I'm guessing the majority of you have seen the Exorcist? Then you get the idea!

After 2 weeks of this I'd had enough, so decided before getting in touch with the hospital I'd take her back to the GP. Their advice was to change her medication back to the ranitidine and stop the omeprazole. Oh my goodness if  I hadn't seen vomit before I had now. Nothing was staying down. We took to syringing fluids into her just to keep her hydrated. She became lethargic and miserable, so on Friday 20th March I decided enough was enough and took her to A&E, this time at Russell's Hall. We were admitted,  and I was set the challenge of syringing 8ml of dioralyte through the NG tube every 5 minutes over an hour, increasing that to 16ml every 10 minutes over the next 3 hours. She was vomiting bits up, but not as much as before. Her overnight feed was replaced with dioralyte,  but she started vomiting this up too. The next day we were back to syringing, however tonsillitis hit me like a ton of bricks and I could hardly stand. I had to call Sam and get him to come and stay with Anna overnight. I felt awful leaving her, but I couldn't stay awake or stand up, let alone take care of her!

After going to the out of hours dr for some antibiotics, still feeling absolutely terrible, I went back to the hospital to resume my normal duties. Over the next couple of days a few things were picked up by us and the professionals,. Her tube had been changed to a weekly, so we changed it back to a monthly as it was more supple and, we assume, comfortable for her. Her milk was too heavy, so a new easier to digest milk was prescribed, on a 50% milk 50% dioralyte mix that we will gradually decrease until she is on full milk feeds. Her medications were shuffled around a couple of times, first she was trialled with domperidone and ranitidine, now she is on both erythromycin and ranitidine. A chest  X-ray showed that Anna is micro aspirating. This basically means when she is having a reflux choking episode, some of the milk she is coughing up is going in to her lungs and causing problems there. With all of this in light, and knowing that her condition is never going to get any better, we made the decision to ask for her to be put on the list for a gastrostomy and a fundoplication before waiting for the usual 6 month NG trial period. For those of you who are unsure what these are, a gastrostomy is a peg, or a feeding tube that is inserted through the stomach wall, that will be much better for Anna in a number of ways. A fundoplication is the tightening of the oesophagus, or gullet. The muscle to the entrance of her stomach will be tightened as will the oesophagus itself. This should prevent the reflux, as medication seems to be having little effect. Luckily for us, her consultant agreed and referred her to the surgeons on the same day, so we're looking at around a 9 month wait.

Now Anna is home. She hasn't had a vomit for around 38 hours, and we're hoping it stays that way, for the meantime at least! She has a follow up appointment for a second barium swallow to check the severity of the reflux, until this point we have open access to the ward in case the vomiting starts again. We're all exhausted. For some strange reason this trip has knocked it out of me more so than any of the others. Today will be spent cuddling my precious baby boy, who has been such an angel and never complains when his whole routine is turned on it's head. I really do feel for him, at times like these he is completely side lined, something that shouldn't happen to a four year old, but completely out of our control. I'd also like to say thank you to everyone for their kind words and actions over the last week - it really means a lot to know people are thinking about us and want to help!  Fingers crossed we're not visiting another hospital for a while now!

Houston, we have a tubie!

It's been a while but here I am again, and what a fortnight we've had. On the 29th Jan I noticed that Anna's wet nappies were smelling a little bit more distinctive than usual. The following day I noticed a visible discharge. I decided to give it a day or two, thinking it would just clear up on its own. On the Saturday morning, Anna woke at 2am for a feed which is fairly unusual for her. At 4am she vomited this entire feed up. The whole of Saturday she was running a temperature and was very lethargic, not the smiley little Anna we're used to. In a space of 29 hours we had only managed to get her to take 5oz  of milk. By 5am Sunday morning her temperature had hit 39.7, paracetamol was not controlling her fever and she was inconsolable, so we called 111 who sent a fast response car out to us. On doing her observations, the paramedic found her pulse rate was over 250. He called an ambulance who took us straight to Birmingham children's hospital. When we arrived, she had to have an in-out catheter to obtain a urine sample, which showed she had a pretty severe urine infection. One of the nurses later explained that her urine was full of live bugs and pus, she had sepsis and they were keeping an eye on her as it would not have been unusual for someone in her condition to develop toxic shock syndrome. She was put on a saline drip though a canula, formula running constantly at a slow rate through a nasogastric tube and was hooked up to a heart rate monitor for 2 days to keep a close eye on her stats. She had numerous blood tests and urine samples taken. The first set of antibiotics used were not treating the infection sufficiently, so a stronger, higher dose of antibiotics were prescribed. She was also on paracetamol and ibuprofen to control her temperature and pain levels. 

All of this took a huge toll on Anna's feeding. Many of you will know already that Anna has been struggling to gain weight as a result of her condition, and has recently been put on a high calorie prescription formula to try and bulk her out a little. Her low weight made it even harder for her to fight the infection off on her own. What we were not aware of is that many children in a similar position to Anna have no concept of pain until it becomes unbearable. When we are feeling a little sick, we know where the pain is, we know how to indicate that we are in pain and we know how to treat it. It appears Anna had had this infection for a while, but hadn't registered the pain making it impossible for us to know that there was anything wrong. This horrified me, god knows how long the infection had been festering away inside her for. This illness has now, for the mean time at least, took the majority of Anna's feeding ability away from her. Together with the paediatrician, dietician, nurses and speech and language therapists, we have put a plan in place to ensure she is getting the nutrition she needs. Sam and I have both been trained in NG feeding, and will now be topping up the majority of her oral feeds with milk through the tube, as well as an additional 400ml overnight feed. We knew it would eventually come to this, it was just a matter of when. 

After 11 days and 10 nights, I am glad to say we are now home. I couldn't write this blog without mentioning the wonderful people, patients, their families and staff, we met during our stay at BCH. The staff work tirelessly and put 100% into everything they do. We were put on to the renal ward for the last 5 days of our stay, and were taken under the wing of the renal families right away. Those children are seriously the most inspiring kids I've ever met, and I wish every single one of them all of the luck and love in the world, here is to hoping they get their match soon. 

So, now our baby is a tubie! Below is a picture of her rocking her new tube! And she picked the right week to do it, as it's national tube feeding awareness week this week. I'm happy to say she's full of smiles again and off the antibiotics, with normal urine once more! We're meeting our community nurse on Thursday and things will go from there I guess. I am now off to have a long soak in the tub and an early night before we're back to the normal drill tomorrow. Hope everyone's been well and thank you all for your well wishes whilst Anna's been in hospital - having the support of our family and friends is the only thing we need at times like this and luckily for us you're all great 😊 x

Happy freaking New Year!

I want to be brutally honest, for myself, because sometimes it is better to get things out than keep them in. I feel so bitter as this year ends. This was supposed to be our year. Everything started fantastic. I had just finished college and was looking forward to starting university, I had a job I really enjoyed to return to, a brand new beautiful baby girl to watch grow and flourish. We bought a car and I managed to gather up the courage to go back to a weight loss support group and start different fitness classes. And then our entire world came crumbling down when we were told our beautiful baby would most likely be severely disabled. Life was put on standstill. Gone was the excitement about watching her grow, instead replaced with the fear of whether she'll ever crawl, walk, talk, keeping watch over every single little movement she made incase she had a fit, or incase she stopped breathing. Don't get me wrong, I wouldn't change Anna for the world. But sometimes, especially days like today, days of reflection, I feel like she (and us) have been absolutely robbed blind for no reason other than bad luck, and that is not fair. I do not care one little bit if that makes me sound like a petulant child, I'm finding more and more just lately I act like that a lot. My self esteem has hit rock bottom. I have piled on weight and am now bigger than I have ever been. It is a daily struggle to pull myself out of bed and paint on my okay face, pretend I am the same person I was before our lives were turned upside down. Slowly I am coming to terms with the fact it is okay for me to feel like this. But I don't like it. Next year will be a happier one, because we know where we stand now. My priorities no longer lie in being the "have it all" mommy I once was. I know now I cannot have a career, be the perfect mummy and fiancée, have a spotless house and look like I've just stepped out of a centrefold all at the same time. This year I will take things one step at a time, and hopefully that will bring me some peace.

I just want to thank all of my family and friends, especially Sam, my mum and my Aunty Karen for being my absolute rocks this year. And for putting up with me and my mood swings. I'd like to apologise to everyone I have distanced myself from - please know I haven't done this intentionally, I've just become so wrapped up in my new life as a special needs mummy and have become so unbalanced in the way of a social life that sometimes it all becomes too much to keep on top of everything. And I'd like to wish everybody who has bothered to take the time to think about us this year a fantastic New Year. At midnight I will he raising a glass and waving goodbye to the whole heap of crap 2014 brought us, and welcoming 2015 with open arms. 

Confirmed diagnosis.

On Monday 27th October, we had an appointment with the neurologist at Birmingham Childrens Hospital who has been looking at Annas case with the general paediatrician. In the room alongside her were the metabolic consultant, the genetic consultant and a sister from the neurology ward, all of whom have been looking into Annas case. The good news is that Anna does not have a neurological, metabolic or genetic condition. The 3 consultants we saw are happy to discharge Anna from their care. It may be that if and when Anna begins having seizures, we will be back under the neurologist, but for now, we don't need to see her again (less appointments, wahoo!). The doctors are now 100% certain Anna contracted congenital CMV in utero. They have told us they expect her to be limited mobility wise, however they are positive that there is some learning capability there. We are not sure of the capacity that she will have yet, but her interest in her surroundings is proof enough to the doctors that she is capable of learning, even if it is just a little. Anna does have cerebral palsy. And she has sensorineural hearing loss in her left ear. The nerve and cochlear are not connected, so she is not able to even be issued with a cochlear implant. Thankfully her vision is perfect.

Getting a diagnosis is harder than I thought it would be. I assumed that when we had a diagnosis, I would know exactly what we were looking at and could look to the future. But I haven't. If anything I feel a bit at loss. We've come to the end of the road, and whatever happens, happens. I'm hoping it will get easier in time, I'm sure it will. I guess we'll just have to wait and see. At the moment, I'm just trying to take things one day at a time. 

I would also like to use this post to reiterate that Anna IS NOT contagious. Just like when we have a bug and then get better. This is whats happened with Anna. Coming near Anna will not infect you and nobody has any reason to think otherwise. This point completely passed me by until the neurologist mentioned it, so I feel as though I should put it out there in case anybody thinks otherwise. Other than this Anna is still happy as ever! She now has 2 teeth, lots of hair and is getting stronger each day. Her physio is going well, and we have now also started having occupational therapy every fortnight. Already her personality is starting to shine through. She seems to have an eye for the men, and a bit of a sweet tooth! She still thinks her brother is the best thing since sliced bread, and enjoys having rides on his back. She loves being outdoors and looking at the trees, giggling when the wind blows on her face. And of course, Sophie the giraffe is still her greatest companion!

Please remember if theres anything at all you want to know about CMV or Anna you can ask us and we won't be offended! We welcome people asking us questions, and want as many people to be aware as CMV as possible to try and prevent this happening to any other family.

Retard spaz.

I've been wanting to post something like this for a while, but have struggled with wording it in a way that doesn't sound either whingey or aggressive. Please note that aggression or moaning is most definitely not the intention of this post, it is simply to make people think before they speak. I would also like to point out that this isn't directed at anybody in particular, it is much more a generational thing. So here goes...

The other week I was out shopping when I overheard a conversation between a young woman and her male friend. One of them said something silly, to which the other retorted "you retard!", followed by laughter on both parts. Since then I have repeatedly noticed people, jokingly in most cases, referring to others as a "spaz" or a " retard". Of course to a large number of people this wouldn't seem offensive at all (even in this day and age!). It is said as a form of mild teasing, without much thought. I try not to be offended. But I am. I am offended because it is used as a form of teasing. It's a negative word which is derogatory towards people such as my daughter. In my opinion, calling somebody a spaz is on a par with calling somebody a n*gger (another word I absolutely detest.). These words are old and outdated and have no place in modern day society. My daughter has spasticity in her muscles,  and will most likely have an intellectual disability (formally referred to as mental retardation). This is who she is, these medical terms are part of her life story. It doesn't make her less of a person. Yes she will have struggles, but she still has all the parts of the human body that makes us human. She is the same as the rest of us. So why should these words that define her condition be used as an insult? That is as absurd as me using "you abled bodied person" or "you intellectually average guy" as an insult. Silly really, isn't it? Please guys, just think about what you're saying before it comes out. I know people don't say it spitefully, but it doesn't make it any nicer or easier for those with disabilities, or those caring for people with disabilities.

Anna had her grommets fitted and her sedated hearing test on the 19th September. As usual, she bounced straight back and was her usual happy self almost right away! We don't have the results yet, but when we do I will post again. This morning we've been to see a genetic councillor to start ruling out any genetic conditions. Anna (and I!) are both really enjoying special needs baby group, which we started a few weeks ago. Anna seems to be coming on, her head control is improving, albeit slightly but any progress is worth recognising! She is also trying to grab at things more and more. And she still loves and dotes on her big brother!

An update.

Yesterday we found out Anna has a sort of form of epilepsy. Her vacant episodes are in fact seizures, as we expected. According to the EEG, they last for around 30 seconds at a time. As the paediatrician  only received the report during our appointment yesterday morning, anti convulsion medication wasn't prescribed, however I am expecting a phone call this morning with details of the prescription she will be put on to control this. As she gets older, the dosage will be increased in order to  minimise the severity of her seizures. I've been watching Anna like a hawk, for some reason since getting this diagnosis I'm expecting her to start having full blown seizures. Apparently her choking episodes may also be attributed to this. 

The good news is Anna doesn't have a metabolic condition. We are relieved to hear this,. The test on her newborn heel prick shows that's CMV was present at birth, so we're now 99% sure that this is the cause of her brain damage. What I'm struggling to understand is why CMV isn't routinely tested for in newborns. If this had been picked up earlier, I wouldn't have had to go through the struggle of getting somebody to listen to me and take me seriously when I suspected something was wrong to begin with. Anna would have had a diagnosis sooner, and measures could have been put in place to ensure Anna was getting the support she required right from the get go. However as this isn't the case, I have to try and let it go and concentrate on the fantastic support we've received since diagnosis. 

Anna is still happy as ever. Like any baby her age, she has started teething. Her lumpy bumpy gums are causing her some discomfort, but after a quick cuddle she's back to her usual smiley self. She's laughing more and more, usually at Leo comically hitting himself for her entertainment, my kids are nuts! I wish I could say the same for myself. I am not coping well. I'm exhausted. I'm not sleeping well at all. I'm waking at several intervals through the night to check that she's still breathing, not choking, hasn't had a seizure. Why is it that all the evil thoughts like to creep into your head when it is time for rest?  I know I've got an amazing support network around me, but I feel so lonely. It's so hard seeing people babies develop normally (not that I'd ever wish this on any parent!) and knowing my baby will probably never do these things. And I feel so selfish for feeling like this. I should just be grateful that she's here and happy. She's happy, and it's her that's going through it all! I have no place moaning about how tough I've got it when Anna has a lifetime of difficulty and prejudice facing her.  I know there's nothing I could have done to stop this, but I still feel partly responsible. My one job was to grow her safely, protect her, nourish her with goodness until she was ready to enter this world, and I didn't do it. I know logically that it's not my fault, but it's hard not to play the blame game when you're faced with such unexplainable situations. 

I feel terrible for Leo too. He doesn't understand the severity of the situation. And to top it off, Anna has an operation on her ears on his birthday. It's the only date they have available. He feels left out as it is, so for the dates to collide in the way they have is awful. I just hope as he gets older he realises we don't love him any less, he is just as loved and cherished as Anna is. All I can do is try and make it up to him by throwing him the best birthday party possible.