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.