Wow! I have just realised how long its been since my last post! SO MUCH has happened - too much to go into detail in one post, so I will give a basic update....
It was the beginning of December when I last wrote - since then:
* Dregan was in hospitral AGAIN for another 3 days, just a week before Xmas. It took him a while to recover - he had antibiotics this second time as his infection markers were way up again. As we know, he is allergic to 'Cillin, 'Cef and Metronidazole - but we found one he could take. He was ill for quite a while this time, it seemed to take it out of him.
* For the rest of December we had a whole bunch of appointments, for both boys. Including Cardiology for Dregan.
*January saw LOTS of maternity related appointments, including a weeks stay in hospital for me as I went into early labour (34 weeks). Steroid injections for the baby's lungs, and the start of contractions every 4 minutes.....
* Dregan had an appointment in Sheffield where it was decided he needed an overnight sleep study, as well as a Physio consult. It was found that the muscles on the bottom half of his legs are deteriorating, and advised he should walk with a stick to help support him and avoid injurys. We were told he would probably need a wheelchair in the future. He was seen by the 'foot doctor' who fitted him with insoles in his shoes. Multiple meetings at school.
* We got the report from the social services meetings we'd been having - you'll remember those - the meetings to get some support for Dregan. The ones we didn't want to have but were assured he would get some support? Well, he didn't! After SO MUCH stress, meetings while I had a broken rib, while I was in early labour, over a period of moths, where we were trying to explaint he condition and they didn't really listen or take it in - while Dregan was in hospital and even at home when he was poorly.... apparently there are no safeguarding issues so Dregan doesn't need any help. They actually said, we wern't abusing him, so they don't need to keep an eye on us!!! The fact he needs support to become independent has totally been overlooked. We are fuming - thats a rant for another day......
* February - Dregan had an appointment with Neurologist, ALT at school (to find some communication aids for him), bloods in Sheffield for the Immunology appt we had been waiting for. Also, the dietician and the speech therapist at school....
*All interupted on Valentines day when baby River decided to be born 4 weeks early!!!! I was quite relieved, my contractions hadn't abated, and I had had very little rest since being hospitalised. Every 4 mins for 2 weeks is exhausting!!!
* Things get a bit more hectic now - River is poorly, and we still have multiple meeting for Dregan and Xander - now is the time the help we were promised from Social Services was greatly needed!! Dregan had Orthotics (for his insoles) and OT appointments, and Xander has his medical appts too.....
* Im in hospital with River still on my birthday (20th Feb), quite a sad day for me, as I wanted to be with the family. But River was still hooked up to machines and under the blue lights. Pete brought the boys over the day after, and we had pizza and played cards. I was utterly exhausted though....
* We were able to bring River home, but he was sent back urgently straight away, as he got more poorly with his Jaundice. So scary - he was let out again on Pete's birthday (6th March), only to be re-admitted 2 more times.
*During all this - Dregan had his overnight sleep study in Sheffield, and had his immunology appointment, also in Sheffield. Except, when Pete got there for Immunology, they had cancelled it and forgot to tell us!! STRESS!
* An appointment at the Genetiists in Doncaster, where it was discussed that Xander may need to be tested for Myotonic Dystrophy - not a happy thought! I have a whole blog post in my head on this one....
* Meeting at Sleep clinic to discuss results - it was decided that another sleep study is to be done, and also a day study to check for Narcolepsy. I don't think he has Narcolepsy. I think he has excessive daytime sleepyness which is attributed to his CDM, but they want to check!
* River is still having his jaundice checked - they think he has a genetic condition, but thats a long story for another post too. In the meantime, he is regularly having his bilirubin levels checked. In Grimsby - a day long every time....
*April was relatively quiet for Dregan - he had some meetings, but it was mostly River who was in and out of hospital this month.
* May - Cardiology appt for Dregan in Sheffield. His results are not entirely normal, but not at the worrying stage yet. It is thought he may need a pacemaker in the future, but at the moment we just need to keep an eye on him. His blood pressure is very low!!!
School statement review (3 HOURS!!!!) - multiple appts with River!
* We took Xander to the Neurologist who believes there is a strong chance he has inherited Myotonic Dystrophty - he was tested. Now we are waiting the results. Ive struggled a bit this month :-(
* Multiple appointments cancelled on us - SO FRUSTRATING! Including occupational Therapy, and Transition meetings!
*June - so far this month we have had the transition appointment (utter waste of time - but I haven't got the energy to go into detail just now) and Occupational therapy home visit (possibly helpful!).
It has been Xanders birthday this weekend, so we have had some nice family time.
And now we're up to date......
So much good stuff has happened too, I have met (online) a WONDERFUL group of people who have children with congenital myotonic dystrophy, and feel like the support is there from others who understand. We have a beautiful baby who has brough sunshine and rainbvows into the family. We have booked a family holiday for the Summer.
So, thats a quick basic update - I haven't gone into detail, as you can see, it would fill a book, and there is lots I have missed. I am sure I will get more detail in as I update (hopefully more regularly) as there is still so much going on.
Im going to leave it there for now....night night!
River Mika Edwin Ashley
14.02.2015
