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Chloe is my four year old beautiful daughter :) She turned four on January 26, 2006, which of course means that she was born January 26, 2002. :) :)
My pregnancy was a normal pregnancy for me - meaning that I was sick for the entire nine months, I got this itching condition, and basically pregnancy was this dreadful experience as it always was ;-) I was induced when Chloe was about a week and a half past her due date. The doctor was going to send me away to wait again, but I was sooooo uncomfortable and so unhappy that he agreed to induce me - yay! The labor was quite easy, I walked around through most of it, and then I got a lovely epidural - hurray! So for part of the time I was even watching tv - it was great! So different than my son Toby who I was in labor with for over 24 hours, and I had to push for over three. They'd just given me a top up on my epidural when they realized that the baby was coming - NOW *grin* but it was no matter - she literally came out after 30 seconds of pushing. The best labor I could ever have asked for - and something I wholeheartedly deserved!! LOL
This is a picture of Toby and Chloe a few days after Chloe was born:
Chloe had her problems right from the start. Not on the apgar - her score on that was great straightaway, but she wouldn't feed very well. It would take literally 2-3 hours to feed her a few ounces of milk, and then we'd be back to trying to feed her again an hour later! She wouldn't wake up and cry for food most of the time, so we had to wake her up every four hours. They said that she was quite like a premature baby, even though she'd been about two weeks past her due date. I think it was even harder in a lot of ways, because we would have to wake ourselves up in the middle of the night to feed her, whereas normal babies would cry for their food and wake YOU up. Sometimes we were so exhausted that we slept through a feed, and didn't wake up till an hour after she was supposed to have started feeding :( But we did our best, and luckily she started thriving :)
Unfortunately though I got post-natal depression again (I'd had it with Toby) and once we realized that I had it, I thought I could fight it on my own. I was wrong, but that's another story - the fact that I had post-natal depression is relevent to this story though as I decided to ask for help via my health visitor. I told her that I thought I had post-natal depression, and that I needed some help with it. She didn't really do anything to help in the slightest, though at the time it was just a relief to admit it to someone. In fact, she went completely the opposite way and really screwed up our family for quite a long time.
You see, Chloe got sick quite a lot as a baby, so some of her appointments with various specialists had to be cancelled, and rescheduled. We always called though and let someone know. There were two times in that entire ten months that I was post-natally depressed at the time, and I couldn't take her because of myself. One of those times the health visitor was coming around to visit, and I couldn't open the door to her. I thought when I was feeling better, I would call her and explain, and as she knew the problem, she would understand. I'm not sure what the second appointment was, I really can't remember. It was the health visitor appointment that really messed us up though.
Ross and I have never been fans of health visitors - they were absolutely no help with Toby, and we've heard so many negative stories about them - but we weren't prepared for what was to come.
Our health visitor booked another appointment at our house, and as per normal (except for that once) I let her in so that she could weigh Chloe and generally see how she was doing (Chloe was on high alert and also had a dietician to make sure she gained the weight she needed too). She asked me about the last missed appointment which we had, and I told her that Chloe had been sick and so we couldn't go, but that we rescheduled it. She asked me when it was for, so I told her. She then told me that it was really important that we go to all the appointments, and I said that I knew, and that we always went except for when Chloe was sick, and she got sick a lot. She said that she wanted to believe that I would go to all of the appointments, and would I promise to go? So I promised. She then said, You're not taking this seriously, you really need to go to all these appointments. and thats when i got annoyed enough to say something. I said to her that I had said that I would go, that we hadn't missed any appointments for frivolous reasons, and that most appointments we DID actually go too. I said that Ross and I knew how important it was, and that when Chloe was well enough to go then we would definitely take her, but that we were in no way going to take her out when she was sick. Anyway, the health visitor then started YELLING at me, saying that she didn't believe me, and that she had to do what was best for Chloe, blah, blah blah. I told her that this was my house, and that she better get out because I wasn't going to be shouted at in my own house. So she packed up her stuff, and went to the front door, where she turned around and said, You know I'm going to have to report you to social services now. and then she went out and SLAMMED the door behind her.
I was distraught. I grabbed Chloe and sobbed to Ross (he was at work) what had happened, well as much as I could get out, and he came straight home to sort it out. Of course he couldn't do much, but we did find out that our health visitor had reported us to social services even before she came to the house. So my answers to her actually meant nothing, she had already done it.
We then got this social worker who came around and asked a lot of questions, and she looked around our house as well, including in the refrigerator and freezer to see how much food we had. I'll never forget this, because when she saw that we had a decent amount of food, she muttered under her breath,'Oh, that's too bad, I was really hoping that you just weren't feeding her.' Lovely, hey? My mouth dropped open, and I didn't really know what to say to her after that. If I had been me, and not post-natally depressed me, I would have had a go at her, but as it was, I was there on my own showing her the kitchen, and I didn't have the strength to fight with her.
She told us that she thought everything in our house was fine, and that we wouldn't be seeing them anymore. However, we had a few boxes on the landing upstairs that she didn't think were safe to have at that place (which they probably weren't), so Ross being Ross, wanted to prove that everything was okay here, so he asked her to come back in a few days time to check and make sure that the boxes had been moved. I wonder now what would have happened if Ross hadn't done that - probably the same events would have unfolded.
The next visit with the social worker went less well. Ross showed them the boxes being moved, which was all well and good, but we found out that the social worker who came around was new, and so she brought her boss along with her the second time. This is when they started being absolutely dreadful. Chloe had pinched herself a few times on her stomach while I was changing her nappy, and I knew what they were going to think, so I tried to stop her, but I was busy changing her nappy, and couldn't stop her completely. Anyway they kept asking me over and over where she got the little red marks from (which would have been gone if they'd looked half an hour later) and I kept telling them. They asked for about the fifth time, and thats when i got mad and told them off. yay Sara!!! I said that I'd already told them where they had come from, and that I wasn't about to tell them again. If they couldn't remember, that was their own problem. Of course I knew it wasn't because they couldn't remember, but that was their excuse. They did a lot of things like that, but luckily Ross was there as well so he fended off a lot of their attacks.
I don't know about Ross, but I was very scared about Chloe being taken away. The social worker said that wasn't what they were there for, but you never know do you? And they kept lying to us - I couldn't manage Chloe on my own. There were times that I could, when I wasn't too depressed, but I couldn't be reliably counted on. Ross and I were fighting a lot, which made the depression that much worse. Not to mention that Chloe wasn't meeting her targets for holding up her head, or sitting up, or anything really aside from eating (cause by this time she was a voracious eater! LOL) so yeah.. we were worried, so we let them go to all her meetings, and we let them come and visit whenever they wanted.
We weren't happy with them being around though. Finally in December of 2002 they trailed along with us to a hospital visit and that is where the doctor informed me and the social worker that Chloe had something called 'Chromosome Ring22'. He was going to test myself and my husband to see if it was genetic (its not), and he explained a little about what Ring22 was, but he said most info would come from the geneticist. I think everyone expected me to be shocked or upset, but I wasn't anything really. I didn't get upset in the slightest, and I wasn't shocked. I think I expected to be shocked if she had something serious, but I actually wasn't. The social worker kept asking me if I was okay, but I was, I was fine. Chloe is Chloe, no matter what labels they attach to her, and I love her no matter what. I've never looked at it the way that other people do, like 'If Chloe was 'normal', she might be doing this...'. I've always just taken everything as it came.
I told Ross that night what they said, and he said that he felt relieved because there was finally a diagnosis. I could understand why he felt that way, but I didn't feel that way either.
So what is Ring22? Ring22 is a rare chromosome disorder in which one part of her 22nd chromosome has broken and formed a ring. Where the ring meets, there is genetic information missing, which results in Chloe having a general global development delay. For Chloe, this shows itself in:, Gross Motor Skill Delay, Hypotonia (low muscle tone), Communication Delay, General Learning difficulties and a Low Immune System. Chloe also has a high palate and since December, 2003 she has had seven serious fibral convulsions due to fever - the first of which was the most serious, and as the doctors kept pointing out, if she had gotten to the hospital even one minute later, she would most likely have died. She also tends to go to the hospital a lot, and she used to get more than a normal amount of ear infections and chest infections. We are happy now if she can stay out of hospital for more than 2-3 months :)
After she was first diagnosed, we started getting a lot of help, including a geneticist (who actually didn't tell us much of anything - not much is known about Ring22), pysiotherapist, speech therapist, etc. In the beginning it was the pysiotherapist that helped us the most. She discovered that one of Chloe's muscles near her collarbone was too tight - which is why her head always went to one side. So each day, whenever we got the chance, we had to stretch her head over to the other side. At first it was hard, but after a little while Chloe started doing it herself, and after that everything went really quickly. She held up her head, she was able to sit down by herself, she started pulling herself onto things - about six months later she started crawling, and about a year after that (September 2004) she walked all by herself!! :)
Since then its been a bit of a rollercoaster ride. She is always progressing, and always doing new things. She has now started saying the words 'Yay' and 'Yeah' and she is always practicing with her voice - sometimes it sounds like she is learning a foreign language though! LOL We've gone through various stages with her, at one point most of the day she wanted to spend the day in the corner just banging on the wall. Luckily that stage has passed now :) As has her climbing stage for the most part - in December, 2005 she climbed onto one of the few remaining items in her room (we had to take everything out for this very reason, but this was something that we couldn't take out). Anyway, she fell badly and fractured her collarbone. Chloe couldn't tell us what was wrong, but we managed to figure out where it was hurting, and the doctor said we were really clever cause they only had to do one X-ray, and then they knew what was wrong. If we hadn't been able to figure it out, they would have had to x-ray everything, just in case. Its a scary prospect the fact that she can't tell us... but I'm sure it will come in time :)
However, Chloe is not like 'normal' children - she needs a lot of help to understand things. Sometimes she catches on really quickly - especially if it is to her benefit ;-) but sometimes she doesn't, and we have to keep doing it over and over until she does. She is a really mischievous child, and she always has a grin on her face. She is such a lovely child, and I love her so much :)
Below are some pics of my darling girl, along with some links to Ring22 sites if you want to learn more. Thanks for reading!! :)
Oh, and what happened to the social worker? I told her to stuff it about five days after we had the diagnosis, and we haven't heard from her since :)
Pics of Chloe
Most are from Fall of 2005 - Early 2006
At Go Bananas, a Play Place for Kids:
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At Go Bananas, a Play Place for Kids:
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At Go Bananas, a Play Place for Kids:
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At Go Bananas, a Play Place for Kids:
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Chloe with her Granddad:
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Chloe and Toby at the park:
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Thank you so much for visiting my page about my daughter Chloe! I hope that you have not only enjoyed yourself, but learned a little about disabilities as well :)
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Copyright Sara MacDonald 2006
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