Catch up!

It has felt quite a while since I last blogged.

Kian is really well at the moment.

Therapy is going steady at the moment for Kian. I have yet another meeting with Speech next week to try and gain some more time or even just some time for Kian with a ST. It is really frustrating and annoying.

Kian has a hearing test next week also then it is back to seeing where we are with the hearing aids

After new year we are having a stair lift fitted at home. People who know Kian to see will know he is not the average size for a child of his age but he is 3 foot and when carrying him up and down stairs on at least 3 occasions a day, it can get awkward. Also Kian does not help in the way of holding on safely, he will pull himself back in a position where you get used to carrying him safely but really isnt ideal.

The push for the stair lift was finding out I was pregnant with my second child. This child was planned and wanted. I found out pretty much straight away as I was getting ready for the great north run on sep 19th and was waiting for my period to come. Sorry for the personal information. I had also been at a meeting on the thursday where I kept having flushes and feeling weak. On leaving the meeting I went to my local morrisons where I bought a test. I thought I would safe embarressment by going to the self service till. Oh no, not to be, I scanned the test and the light started flashing and I had to wait for an assistant to come over to my till. This was typical of my luck. Anyway, finally bought test and went to supermarket toilet to do it and there were the two lines. Eeeeee! I went in the car and spoke to a friend, I had to have some time to gather myself before I went home where my brother was babysitting Kian. I went home and took the second test in the pack to be sure, there were the two lines again. I had been able to speak to Craig by then who most will know works away. I thought we may have been different this time and kept it to ourselves until we knew what was what, unlike when I was pregnant with Kian, we spread the news straight away. Well we ended up sharing the news to close family and friends. I was aware that there could be mixed opinions. For instance would we cope when we have a disabled child to look after, what if this child was disabled too!

We had discussed future pregnancies with genetics and they had said there was no reason for us to not to go on to have a healthy child and to get intouch if I did become pregnant. I think everyone seemed quite pleased with the news, though I wouldnt have been shocked to hear people question our decision. The argument on our side had always been, why shouldnt Kian have a brother or sister and did we as parents not have the right to experience parenting from the different angle. Believe me looking after a disabled child is actually all I know at the moment, and I get great satisfaction a pride from Kian. I never said 100% after I had Kian that I would have another child, but Kian loves children, all children and I cant imagine my childhood dare I say, without my brother and sister.

My first decision was to pull out of the great north run, I know people will say pregnancy is not an illness but we didnt want to put anything to chance. I phoned the drs to see if I needed to go and see a dr but because of having the two tests I just had to register with the midwife. Being at the same drs from when I was pregnant with Kian, there is one main midwife and I did ask whether I would have to have her. She was not very approachable when I was pregnant with Kian, and I knew this time round I needed someone to be comfortable with.

Myself and Craig went to meet with Kian's genetic dr about the pregnancy. I have always said how nice and approachable he is and stick to that. He was very pleased with our news and spoke about our options. He did explain that there were tests we could have which could test the baby for whs but because me and Craig were not carriers of the gene then there would be a higher risk of miscarriage than the baby having whs. We came away from the appointment planning to have extra scans and just thinking on going ahead with the tests. Something had struck a cord when I got home with what the dr had said that we hadnt known before. He said that though we did not have the abnormal gene, Kian having whs could have happened 3 ways when conceived. If it had been two ways, it would never happen to us again but if had happened the other way (and it had to do with how the sperm meets the egg) then there was a 1 in 200 chance of it happening again. 1 in 200 didnt sound low risk when considering origionally we were told Kian being born with whs was a 1 in 90,000 chance!

The next morning we rung and told the dr we wanted to go ahead with the test on the baby. This is something that not everyone would choose to do or agree with but it was our decision.

We were booked in roughly going on my dates so that I would have a CVB test on the baby at 11 weeks. This was booked a the RVI. I was very nervous, worked up, anxious, frightened about this test. What if I miscarried? What is the results comes back bad? It was a horrible run up to the test and one where I felt I could not just let myself enjoy the pregnancy. It is very easy for people to say, it wont happen again but when you care for a child with a disability, it is heartbreaking at times. Not for your own selfish reasons but for what your child goes through and what they wont be able to access in life. But I must add, I hope that I give Kian the best quality of life possible and the most opportunities possible. And believe me he is very happy!

The day of the test came and I knew we would meet with a cousellor from genetics. I wasnt prepared for them to try and talk us out of the test. It clairified how serious this test was and they asked if we wanted to wait for the amneio at 16 weeks. I had some time alone with Craig and we spoke it over and agreed we wanted to still go ahead with the test if safe as possible. We had been told that the dr would not go ahead with test if she thought there were too many risks. So we went in and first of all saw our baby on the screen and the heart beating. That was a relief because it had been something I had worried about, getting there and there being no heart beat. Where the placenta was, it was not in the best place for the test to go ahead as the dr would have a struggle to get there. They said instead of a needle through the tummy they could try vaginally but we had already decided no to that as there was a greater risk. We booked in for the amneiotesis at 16 weeks.

Going home, I had thought we would have had the test. I was relieved I hadnt had it, but now seeing the baby move and heart beat I did have second thoughts about going for the amneio. Armed with scan pictures I felt like we still couldnt let everyone know our news yet even though I was 12 weeks.

So the amneio was at the beginning of december and I did go ahead with it. I think I would have still went ahead with the amneio anyway as I felt I wanted to enjoy the pregnancy but couldnt with fear of the unknown.

3 days after the test I found out the quicker results which was a count of the chromosomes. We were told that the results up to now were fine and that we had no worries about syndromes such as downs syndrome amongst others. We would find out the results for other chromosome abnormalities including whs in 2 weeks as they would have to grow what they had took from the baby. We did find out that day also though that we were having a girl. That was quite emotional. Then last monday I received the call to say that all the test results have came back fine. It was such good news to hear. So though chromosomes arent the only problems that can arise, it is a weight lifted!

Kian will be 4 next week, I cant believe where the time has gone. His progress is very very slow, but he makes it and he has fun in the meantime. Seizures arent completely under control but they seem to arise when he is poorly. My mission of 2011 is to get Kian into a school which meets his needs and challenges him too. This is a whole new stage for us, but hopefully we can get it right. I know it is very exiting to think of Kian with his little sister xxx