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