Family Life

Well ..... It's been a long time since my last blog - I stopped blogging as it all became to much to bear with Callum, I struggled, we struggled, our family struggled but, we got through it and continue to do so.  Callum had his Gastrostomy Tube in July 2014, it was a difficult decision to make as although the nasal gastric tube was horrid for Callum, it was temporary and moving to a Gastrostomy Tube seemed like a permanent solution.  That word solution though is the positive part of it all, to have a solution to something is what we look for when tackling  life's problems. I have come to realise that although it's a very different life to what we planned it's about managing it and finding the positive side to everything.  Whilst it took me a long time to come to terms with  Callum's Gastrostomy tube and get used to him having a tube coming out of his tummy it has kept him quite stable.  There have been too many hospital admissions to remember since my last blog and each one seems to be more scary and draining than the last but, we get through it and keep getting on with it.  The disruption to family life seems more noticeable now which I know is down to Ronnie getting older, he's 7 now and is at junior school. As a parent you naturally shield your children from traumatic events or upsetting situations but when those things are happening in your house and it's happening to their sibling it is impossible to do this, it leaves me feeling like I've let Ronnie down and I feel so guilty that he has seen countless paramedics rush into the house to stabilise Callum and then rush him to hospital in an ambulance with me going to, not knowing when Callum and me will be back home again.  But this is our family life, and we all have to manage it as a family. We have fantastic families who help us so much especially when Callum's in hospital, so at least Romnie has a routine which he is familiar with during these periods. Without them I know we couldn't do it.

It's been a while........

I've been meaning to write but then something else happened and it's just all snowballed from there.
Callum got chicken pox in October last year and unfortunately since then he's been quite poorly and in and out of  hospital ever since.  To cut a very long complicated story short Callum is now being fed through a tube which goes into his nose and into his tummy. Callum is unable to maintain his blood sugar and he just doesn't eat enough to maintain it now.  He's always had feeding issues but it's just got worse and worse to the point we are at now; he will only eat beans, chips and weetabix just little mouthfuls never the whole serving.  He now has 4 tube feeds a day at 7am, 12pm, 5pm and 11pm.  He has a high calorie milk which is basically a meal in itself. He has a pump to slowly pump the milk in so that he can tolerate the feed, this takes half an hour to go through.   To say we have found this difficult is an understatement.  I know it is necessary but I now feel like a nurse/parent, the amount of medical supplies needed is such a lot, we've been given a community nurse who comes out weekly to change Callum's tube and we have monthly delivery a if everything that's required: giving sets, syringes, ph paper, tape, tubes, milk, dispensers ect... Boxes and boxes of things it really does feel
Like a hospital here and it's so hard trying to find room for everything too.
The plan is to see if having regular milk feeds it may stimulate Callum's appetite but sadly that do far is not the case he is eating less each day and he is now in the waiting list for a gastrostomy which is a tube directly into his tummy.
During the month of March we spent 3 weeks in hospital it's such an unsettling time for all of us and our family, I feel like I'm abandoning Ronnie during these periods he's 6 in July so is becoming more aware of things now.  Thankfully I have an amazing family and family in law without whom we could not manage.
Throughout all of these new problems Callum remains happy and is enjoying life. Which of course is the most important thing in all of this.
I honestly feel like it's all happening to someone else, I look around the house and see all of the boxes and can't believe it's happening.  Watching Callum asleep when he has his 11pm feed reminds me of when he was a baby and I would never have imagined we would get to this.
I think added to it is when we go out or I'm out with the boys on my own peoples reactions to Callum are genuinely lovely but then there's others who stare and ask really tactless questions.  I'm getting more used to it but again it's another side to all of this.
Callum's also got to wear bifocals in his glasses now as his low muscle tone is affecting the muscles in his eyes.  I chose him a fab new pair of glasses today.

Pardon?

It's been a while since my last blog, I felt like i needed a break, I don't know why, things sometimes seem easier if you don't think about them so much don't they?
I keep thinking the same thing, this is as bad as it will ever get, nothing else can go wrong can it?
When I say wrong I mean we won't have any more things to worry about........
Why oh why do I even let those thoughts enter my mind?

I feel like my head is going to explode with it all, so I thought I would write about it.

We have had a flurry of appointments over the last few months for Callum, a couple of overnight stays in Bristol and Great Ormond Street doing various tests looking at genetic syndromes and metabolic disorders, most of them I struggle to understand as they are so complex and scientific almost.

With each test there is the hope that this one will lead us to a diagnosis, but there is also anxiety, as Callum is a bit older now he is becoming more aware of things hurting, and doesnt want to be held and poked and prodded, and I hate that he has had  to have all these invasive and distressing tests done in the first place.  But I think we may be a little nearer to getting a diagnosis.

A metabolic error has shown up a positive result and we are awaiting the results of a skin biopsy to confirm this.  Bristol rang this afternoon to ask us to come for an appointment on Thursday to discuss the results.

We were also told that it looks like he has a very rare genetic syndrome, we are awaiting X-ray results to determine this.  We are also awaiting his results from his MRI scan of his brain and lumbar puncture.  We have an appointment in December to go through all of these together with the brain wave and muscle test all of which were done at great ormond street.

We were also informed that his b12 is low which needs to be investigated further, so more blood tests were taken on Friday.

 I feel like I live at the hospital at the moment.

This is where we are up as at 11:00pm tonight.

Oh but then the other worry is my oldest son, we've had concerns regarding his hyperactive behaviour for a while, so today we took him to see the paediatrician. After going through it all with them they've said there is a possibility that he has ADHD.

You really couldn't make it up could you?

But I refuse to wallow or be negative about the challenges we are facing as a family, we are lucky to have each other and each others families supporting us.   Things can only get better and with time things will be calmer and less worrying I'm sure.  I won't pretend that it's not hard because it is hard bloody hard in fact, but we will get through it and deal with whatever the next few month have in store.

It's now a yes

Fab news, can't believe it but we asked the panel to reconsider Callum's place at the special school and he got in! We found out on Friday and it gave us a good boost and a great start to the weekend.  I think I slept the best I have in a long time on Friday night, I didn't need as much under eye concealer the next morning! 

The week before was tough, a 2 night stay in Bristol Children's Hospital having continuous blood glucose monitoring, liver scan and another brainwave test. Although it was draining and upsetting it was all worth while and it's over now.  We've got to go back on 29th of July for another 2 night stay to have a fasting glucose monitoring test done.  Not looking forward to it but I'm just going to enjoy the next few weeks happy in the knowledge that we've got Callum into the best setting for his needs. Xx

Overload

Today we had an appointment for Callum with the Metabolic Team in Bristol. We've been concerned about how unstable his blood sugars have been since he started walking.  He has to have a metabolic supplement in his drinks in order to maintain it throughout the day.  Callum will only eat certain foods ( mainly orange coloured food)! So it makes a difficult situation worse.

They want Callum to come back into Bristol hospital for 2 nights on Wednesday to have Continued Glucose Monitoring for 48hours.  This involves inserting a device, like an implant into his arm, they then have to put a plaster cast on his arm to keep it in place.  his blood sugar will then be continually monitored and tracked.  While he is on the ward they have also arranged for a scan of his liver to be done as its been enlarged for a while, they also want to get someone from the eye clinic to check the back of eyes.

A lot to take in at one time.

It's so difficult as I know it all needs doing but I'm worried what they will find out...

It's hard because I feel  like I'm abandoning Ronnie again!  Steve will stay at home with Ronnie so he doesn't get unsettled so at least one of us can be with each of

them!

As Ronnies getting older he does pick up on things with Callum and gets so upset when he's in hospital. I think lots of FaceTime is in order so the brothers can see each other!

I feel so anxious about it all x

It's a No then

So much has happened since last post, Callum's doing really well physically and amazed us all by taking his first few steps on his own, without his walking frame in April and week by week he progressed to what we have now.... A lovely little boy who can walk! Fantastic and amazing all at the same time, this has opened up so many doors for him, and us as a family we are thrilled with his progress.  

Sadly we still don't have a diagnosis, we've been seen by metabolic specialists in Bristol who are running more blood tests, he's now on a metabolic regime which we add to each drink to help maintain his blood sugar, as since he's been walking his blood sugar levels have been dipping a lot as he's using more energy.  We also saw a neurologist at great ormond street who thinks part of his brain may not have developed properly so they want to do another MRI of his brain under general anaesthetic and do a lumbar puncture at the same time. 

Callum still attends the special needs group weekly and he has just had a place turned down at a special needs school to start play group sessions.  I'm so disappointed and cannot understand how Callum will manage in a mainstream playground, yes he will have one to one support, but his needs are so complex and he doesn't learn in the same way as others and has fixations on things which take up a lot of time.  I don't want my son to be the different one, I think as times going on I am accepting that he will always be different.  

What I always remember is that he's happy and enjoys everything he does and vice versa for anyone who is involved with Callum.

The next phase of battling for Callum commences now, I think because Callum is undiagnosed it's almost a grey area where help is concerned because its unknown what the future holds and whether he will continue to progress in the same way.  Wish me luck! 

It's been too long!

Haven't written for a while, everything going along the same really.
Ronnies doing really well and we have mastered his sleeping, which has had a positive affect on his behaviour, and he's still really enjoying school which is great.
Callum's had a few up and downs, his blood sugar dropped very low in December and January but the last few weeks have been okish. I've had the usual rollercoaster of emotions recently with everything I think as Callum's getting older its becoming more apparent that he's different. Having a child that's different isn't any less rewarding or enjoyable it just comes with more worry and uncertainty. I have moments where i burst into tears, at the most inappropriate times, but it is just so very heartbreaking at times. i often feel in a bubble with Callum, but then i see something and it just hits me and makes me realise what a struggle life will be for callum. We will, with the help of our amazing family and friends make it as easy and happy for him x

We had a letter from the genetic team today about starting the DDD genetic study, Steve and I have got to have a sample of our DNA taken as well as Callum's, and the first results could take a year and then after that who knows, but at least the ball is rolling now. We have lots of appointments coming up, a metabolic specialist to find out what's causing Callum's blood sugar problems, an endocrine specialist and we have asked to be seen by great ormond street too which we are waiting for an appointment for.
Tomorrow we have a meeting with all the professionals who help Callum to discuss which playgroup he should start in September, I've looked round a mainstream and special needs one and feel the second option would be better for Callum. (Will be glad when its over)! I've also been struggling with Callum's behaviour (if that's the right word) he has become fixated on things (the latest is sunglasses) and often does the same thing over and over again, I'm hoping to get some ideas on how to manage this tomorrow too. To be continued....

It's been a while

Alot has happened since last post, ronnies got his legs in casts again to break his toe walking habit. He had them on for four weeks to start with it but as soon as they were off he started doing it again, so he's got them back on for six weeks this time. He's so good with it and doesn't really notice them.
Callum's appointments have continued and he went in and had his blood tests to check his hormones as he's not growing as he should. He had to stay in overnight as they wanted to monitor his blood sugar and tested it every 3 hours through the night. They put a drip in the next day and took blood every half an hour for a 3 hour period. That was tough, probably the hardest thing I've had to do with him do far, I know it needed to be done but each procedure is more distressing for him.  We have a 4 week wait for these results.  If he has a problem with hormones he will need an injection every day until he's in his 20's, if his hormones are ok then the reason he's not growing is because if the syndrome (whatever that may be) and they won't be able to do anything about it.  We saw the paediatrician last week who told us the muscle biopsy came back clear which is great news x he told us that Callum will always have low muscle tone and things will always be hard for him, he will also need to wear splints when he walks.  They also discovered he has a heart murmur which they think may be caused by his muscle tone so got to go back in two months about that.  We are awaiting a walking frame with wheels to help him learn to walk. I really can't believe he's going to be 2 in December but,  No matter how hard things get or how upsetting things are we are lucky to have Ronnie and Callum and I am going to enjoy every moment with them
Both xxxx

Overload

Well what a week, Callum had his muscle and skin Biopsy and grometts last Thursday. He did really well and has recovered fully. We now have a 2 to 3 month wait for results. We had cheek biopsy results back which were clear so that was positive news.
Ronnies ear has been fine since his grommet was taken out two weeks ago do that's good. I took Ronnie for his appointment with the consultant about his toe walking this afternoon, he's been doing this ever since he started walking. He's had physio and exercises to do but nothing has worked. So today he has had half leg casts put on both legs to break the habit. These will need to be changed every week and remain on for 6 weeks. Poor little chap, he's been so good about it and taking it all in his stride. I honestly feel like I live at the hospital. It's not the best timing either with him just starting school and he's just joined a local football club. We will make the best of a difficult situation, and hope that this does the trick. Would love to know when and if things are going to get easier and less worrying xxx

Ronnies First Day at School

Today was Ronnies first day at school, I can't believe he's so grown up! He looked lovely in his uniform and went in ok to start with but did cry when we left. It was a long wait to collect him as he does full days straight away. I didn't need to worry as when I picked him up he came running out and was so happy I am so pleased, we are so lucky to have got him into that school with all his friends x x
Ronnies ears have been causing him problems again and he ended up in hospital overnight with it a few weeks ago. We saw the specialist yesterday and he needs to have the grommet removed as its the cause of the continuos infections. He needs a little operation for that to be done, not very nice for him but will sort the problem out.
Callum started back at his special group today and we tried to do some painting with him but he got very upset when he got paint on his hands, he's very sensitive to textures but we will keep trying. He has progressed well recently and has started to sit up on his own and crawling a bit too. Both are fantastic to see and it's nice for him to be able to sit up himself now too. We are nearly 5 weeks into the 6-8 week wait for the results of his cheek swab, every time the phone rings my heart sinks. He's going to Bristol for his grommets and muscle and skin biopsies on 20th of this month do will be a relief to get that over with.
Still trying to keep positive and hopeful that whatever it is causing Callum's problems won't be to bad.
Very lucky to have such lovely boys and so proud of how well Ronnie did today at school xxx

Tough Times

It's a been a tough few weeks since my last blog. Callum's genetic photos have now been looked at, they want to look at a specific chromosome now in more detail and have found a rare syndrome which they think he may have and be the cause of all his problems. He had a cheek swab done today, the results will take between 6-8 weeks to come back. We saw Callum's paediatrician on Tuesday and we went through each of Callum's problems together. His length was measured and he hasn't grown in length at all so we have been referred to a growth hormone specialist now too. Callum needs to have some blood tests done to check his growth hormones are ok, he had to go into hospital for a morning and go on a drip and have a blood test taken every 30 minutes. If Callum does have this syndrome they can't do anything about his legs not growing. Callum isnt talking and they think this is because of a genetic problem aswell so we have started using sign language with him now.
We are still awaiting a date for his grommets, skin and muscle biopsy, it's taking a while to organise as three people have to be available at the same time to each do there own thing.
As much as I want to find out what's causing all Callum's problems I almost feel as though I don't want to find out, as once we know that's it then, forever, he will always have it and we will have to face up to it and accept it. Certainly struggling with it all, I feel consumed with tests, appointments and waiting at the moment. Perhaps though we are a bit closer now to finding out what the future holds for our darling little boy xxxx

Tough Day

Had a hard day today, Callum has changed groups at his special needs group, the realisation that things may always be hard for Callum has really set in with us. The specialists think his problems may be caused by either a genetic problem or brain problem. He has to have a muscle biopsy and skin biopsy when he has his grometts put in, they also want to take a mouth swab for his DNA to look at a specific chromosome. He went in a stander today for the first time and it broke my heart to see how much support he needs just to stand up. I am grateful for all the help and intervention he gets it's just so tough. We also have to start teaching him sign language as he's not saying anything and it will help him and us to communicate. We also have fortnightly visits from a lady who helps bring his development on through play. We have his shoes now as well which was for the purpose of going in the stander. I find it so difficult and almost feel like its happening to someone else, not that I would want it to, I suppose that's just my way of dealing it. The specialists have said that as he gets older it will be more obvious that he has problems because he is so delayed with his development.
I came out of his group today and bumped into someone I went to primary school with, I burst in tears and felt so bad afterwards she didn't mind I know, but it's hard to fight back these tears at the moment.
I suppose that for a long time we thought Callum would get better but as time goes on we think differently, and it's so sad to think of him at 8 or 9 or 20 and still having problems. All I know is that we will do whatever we can to make him happy and give him a great life.
We have had great piece of news last week, we won the appeal to get Ronnie into our first choice of school we are over the moon, it's such a massive weight of our minds and he's so excited too. It really did give us a boost. So on we go keeping positive and fighting back those tears xxxx

A lot to report

Not done my blog for a while, a lot has happened in the past few weeks. We have just had a lovely weeks holiday in Bournemouth which has really helped us all feel more normal again.
Callum started to become unwell the week of the Jubilee, just a temperature but nothing else, on the Saturday he was poorly overnight and wouldn't eat or drink. On Sunday we were told to take him to hospital and he was dehydrated and they couldn't find anything else wrong. He stayed in for two nights and had to have a feeding tube put down, they discovered he had a bad ear infection which was causing everything else. They sent him home on Tuesday with antibiotics but he was still not eating. I was worried taking him home as he still seemed so poorly. We did our best to keep him drinking on Wednesday but he was sleepy all day so I took him back to drs, they told me to bring him back in the morning. He was no better in the morning so the dr sent us back to hospital. When we got there the nurse went through everything and tested his blood sugar which was very low at 1.6 it all happened very quickly after that with drs and nurses rushing around us, they had to get a drip in with sugary fluids and gave him some high sugar gel to boost his sugar levels, it was so frightening. We were then moved to a ward where they checked his blood sugar every hour, Thursday night felt the longest night of my life, I really thought the worst, by the morning his blood sugar had dropped again so they had to increase his sugar in his fluids, they also put a feeding tube down again to try and get his tummy used to eating again. We stayed in Friday night as well and his blood sugar levels became stable, on Saturday the drs said we were ok to take him home and explained that he has a condition which means when he is poorly he can't maintain his own blood sugar, we have got our own testing kit to use if he isn't eating or is poorly, and if it goes below 3 we have to give him the sugary glucose and take him straight into hospital, they have given us open access now.
It's taken a while to sink in and I feel like its another thing to worry about with Callum, we will get our heads around it but added to everything else it's just a lot to think about.
It's been such a traumatic time recently so our holiday really came at the right time, it's been nice to have a break from everything. It's hard coming back to letters from the hospital and specialists as its all very real again, We are still waiting for a date for Callum's grometts and biopsies as there's a problem with the funding for it, so got to sort that out now we are back too. I just hope that once the biopsies are done we will have better idea of what's causing all of Callum's problems.

Not how we planned our Jubilee

Unfortunately Callum had to go into hospital Sunday he was sick Saturday night and couldn't keep fluid down on Sunday and was really poorly, he had to have a tube down his nose and throat overnight to rehydrate him, Monday he was even worse and they discovered he had bad ear infection and as he has glue ear infection going into his tummy, so they gave him antibiotic injection and antihistamine. They sent him home yesterday with antibiotics. I took him back to drs earlier has not drinking much and high temperature again, I have to take him back in the morning. He is not eating but they said as long as he is drinking that's the most important thing at the moment. Fingers crossed for an improvement over night.
Ronnie has been so good, I stayed in at night with Callum and the Steve came in the morning so we were both there with Callum, ronnie had a lovely few days with our family and didn't miss out on anything so that was nice. He is such a kind little boy and said this morning I don't like it when my brothers poorly mummy xxxxx

Crystal Ball please

I am now fully recovered which is great, the best thing is being able to lift the boys up again. We have had a few appointments with Callum, we saw the ear surgeon in Bristol on Friday they said his problems are hopefully just caused by glue ear, so they are going to put grommets in both ears and retest his hearing once it's settled down again. They think that this is affecting his lack of speech so once that's sorted I am sure he will start saying words. He is also going to have a muscle biopsy at the same time. This leads onto today's appointment with the paediatrician, the blood test results that are back so far are normal so that's good news, we are just waiting for the muscle enzyme tests to come back now. He is very puzzled by Callum's problems and is not sure what's causing it, it may be that it's a genetic problem which is why we saw the genetic specialist. The paediatrician is going to speak to him and a neurologist to find out if any further tests should be done at the same time as his grommets and muscle biopsy. Callum is still very floppy, unable to stand and unable to move from a sitting position so it's quite difficult really. A positive thing which came out of today was that Callum's understanding of things is good, he can point, wave, do patter cake and do round and round the garden on his own hand, when you ask him too. I do find it very difficult not knowing what is wrong with Callum and we now have to wait for all these other tests to be done to find out what's causing it, I wish I had a crystal ball so I knew what was going to happen. I have unanswered questions flying around my head all the time and I really hope that in the not to distant future we get answers to them, then we can deal and manage the situation a bit better.

Nearly Recovered

Doing really well with recovery from hysterectomy, able to drive now and only 8 more days until I can lift things, most importantly 8 days until I can pick Ronnie and Callum up again it's been torture!
Ronnie is doing really well sleeping till atleast 5:30 every night and is dry most nights too so that's great. He is doing really well at football, which Steve takes him to every Saturday morning, it's so nice to hear all about it from him when he gets back.
I took Callum to his group on Monday at the special needs nursery, he is making progress and has started pointing now which is fantastic. It's easier to know what he wants know as he points to his drink or a certain toy he wants to play with. He is definitely more interested in toys now as well.
We had an appointment about his squint on Thursday and it's no worse so that's good, we have to see a paediatric eye specialist in a few weeks to check everything. He has also been referred to a teaching advisor about his hearing so that will be helpful. We are going down to Bristol on Friday to see the ear surgeon to decide whether he should have grometts or hearing aids. He had more blood tests last week as well they are checking his thyroid again and checking his levels of minerals in his blood as some syndromes affect these levels and that could be the reason for his low muscle tone perhaps?
We took him to have his feet measured again today but they still haven't grown, so we bought him a nice new outfit instead!
We had the school placement offer for Ronnie last week and sadly we did not get any of our 4 choices do we are starting the appeal process soon. I do wish that we could have some good luck our way soon! I am doing my best to keep positive with it all, and i think when we know the exact cause of Callum's problems it will be much easier to manage. When this school business is sorted that will reduce the load as well. I know I stopped saying it but...... Fingers crossed with it all x

Highs and Lowd

Recovering well getting stronger again so that's great. Steves been home all this week and we really have had a lovely time altogether. We have had highs and lows but sharing the lows is always easier. On Tuesday Callum had his medical photos taken which left us feeling rather fed up, its not a nice thing to have to do but of course it will benefit Callum in the long run. They have sent the photos off and we now have to wait for the 5 specialists to get together and look at them and see what they come up with.
On Wednesday we took the boys to a big soft play place, they had a cafe so I was able to rest there while Steve played with the boys. We took them to the toddler part as soon as we got there as we thought they could play together in there. As soon as we got in there I suddenly realised that this would not work with Callum, I sat him down and was surrounded by lovely children, younger and older than callum crawling, walking, talking and interacting with each other and tears started rolling down my face, it was so heart breaking to see my darling son so isolated and helpless I have never felt so awful, I felt guilty almost for taking him there. Ronnie was having a great time which is what we want of course but it's ever so hard as they are brothers and I wanted them to do this together. In the end we decided that Callum could stay with me in his pushchair and Steve would take Ronnie for a big play up. Callum and I had a lovely time together playing with his rattles and things, he likes it if I put something on his head and laughs when it falls off! It's just I feel he is so isolated at the moment and separate from other things. Yes he is happy which I am so grateful for its just not what I had planned for, but all the time with Callum we realise that we have to adapt things to suit him and we will. I think not knowing what the future holds or indeed what the reason for all of his problems is makes it tougher all round. On a Positve note I couldn't ask for a more fantastic husband who makes all of this bearable, his support is fantastic Callum ronnie and I are so lucky to have him xxx

Recovering

Well, what an uncomfortable few days i have had, operation went well and was looked after very well in hospital. Came out last Thursday and am today finally starting to feel brighter in myself and not in so much pain. Just think in a few weeks, I will feel like a new woman.
Since home I have had so much help with the boys and everything round the house so, I really am very lucky.
Ronnie and Callum have been really good with it all and Ronnie is so kind he keeps doing things to make me better.
Had a bit of disappointment with Callum, we went to collect his new shoes on Saturday and when they put them on they were too big, they remeasured his feet and they were not on the scale. They had measured his feet incorrectly the last time we were there. In normal circumstances this would be frustrating but in ours, we found it quite upsetting. Onwards and upwards in 4 weeks they hopefully will have grown. We also saw the genetic specialist on Monday, he was really nice and went through everything with us, he has arranged to have some photos taken of his hands, feet and face and then five other specialist will then have a look and see if they have any ideas on any specific syndromes. He did say that it can take years before you find out the specific diagnosis. The main thing is Callum is a happy content little boy and he knows no different. We are concentrating on what he can do and keeping positive xx

Feeling rough

Had a rough few days had a migraine and sickness Tuesday morning, feeling very wiped out still, got some antibiotics from dr as have infection too and need to be at my best for Monday's operation. Have had a nice few days with the boys, ronnie gave me two of his cars to keep by my bed to make me feel better he is so caring and it did make me feel better!
Still waiting to hear about all of Callum's appointments but am quite pleased we don't have any dates yet as I can put it to the back if my mind for now.
I am afraid I have started smoking again after 6 years, finding everything with Callum such a worry, and as I don't drink needed something to help, it's not the answer I know and will definitely not be a permanent thing, I just felt I had reached my limit with it all two weeks ago.
Really panicking about my hysterectomy on Monday so nervous, I know after I have recovered I will be so much better off, I have had lots of minor operations over the years but nothing major. Looking forward to a fantastic weekend with my amazing family xx

A lot on plate

Had a good week, ronnie on week five of sleeping through, I can't believe how much better I feel!
All going well with Callum, we saw the ear surgeon on Thursday who said he is a bit young for grometts so he would have to have hearing aids in both ears, she has referred us to an ear surgeon in Bristol to make the final decision as he would have to have the operation there because of his low muscle tone and the anaesthetic. Bit of a waiting game again now really, I spoke to his paediatrician to update him. He is going to take more blood to retest his thyroid and then store some blood ready for the genetic specialist.
Not sure what will happen with his ears, I don't want either to happen but obviously want what is best for Callum.
Keeping up with my positive approach though, it's all to much to manage, and on a relieving note Callum's second brain wave test came back normal so that really is great news. They think his arching is associated with his silent reflux and he will grow out of both.
I had my pre op appointment today, just going through the procedure, would rather not know really, but sensible to know what's going to happen, not looking forward to it or the recovery afterwards either, got some much help from my amazing family so am very lucky.
Wishing you all a good weekend xxx