Welcome to my page for my daughter, Chloe!
I was induced when I was 39 1/2 weeks. Chloe was very small, the labor was pretty easy compared to Toby's, and I only had to push for 30 seconds. She was six pounds and eleven ounces - just like me when I was born! There was some concern though as she still had some of the material on her that earlier babies at 35-36 weeks have. Some of the nurses were wondering if she was premature... I guess knowing what I know now, she just wasn't developed as she should have been. Although the ultrasounds always came out okay...
So, Chloe was born on January 26, 2002 and is currently seven years old.
From the very start we had problems. Chloe wouldn't wake up to have her food. It was also difficult to make her latch onto the nipple of the bottle. We had to wake her up every four hours and try and get her to eat as much as possible. Often her feedings would last 2-3 hours, and then an hour later we would be at it again! Nighttime feedings were harder as well - normally you have a crying baby to wake you up, and who insists that you get up and feed them. Not so with Chloe... she just slept right through so we had to use an alarm clock to wake ourselves up to feed her. It was really hard....
At one of Chloe's checkups, the doctor thought he heard a heart murmur. Toby has a heart murmur, so we weren't concerned about this much, but we went to the specialist doctor as soon as we could get in. The heart specialist said that Chloe didn't have a heart murmur (*whew*), but that he was concerned because she wasn't sitting up yet. She was seven months old at the time, and we knew that the average was six months, so we weren't all that concerned at that time. Anyway, he was, so he ordered some blood tests done, just to rule out any chromosome disorders.
During this time, we had a health visitor who believed we were abusing Chloe and that was why she wasn't meeting her milestones. She reported us to social services, and apparently continued calling them every day with 'concern' for our baby. I don't know what the matter was with her - anyone could see that we weren't abusive - but we had a social worker poking into our business all the time. This was on top of the fact that Ross and I were fighting all the time, and I had post-natal depression. The health visitor who is meant to be helpful really screwed up our lives and was not helpful at all.
Finally, when Chloe was eleven months old we had another appointment with a specialist. This time they were telling us that Chloe had a rare chromosome disorder called 'Chromosome Ring22'. This means that her 22nd chromosomes look like this:
So, as you can see, one side of the chromosome has formed into a ring instead of being straight. The point that it got 'stuck' into a ring is where her breakpoints are (which are p13q13), and also where she may be missing information that should be on that chromosome. Nobody - not even the highest paid doctors - know what may be missing or what each chromosome does. Technically, because one of her breakpoints is 22q13, Chloe also has Phelan-McDermid Syndrome, though we generally just tell everyone that she has Ring22 as that tells the whole story.
This has meant that Chloe has global developmental delays in every aspect of her life. It affects her, and our family, tremendously. She can walk, but not for long periods of time. She can't talk consistently as of yet, though she has said words at various times - 'dog', 'yes', 'no', 'mum', etc. She will start to say them for a short time, and then stop. As of right now she has not said any words in the last six months aside from 'good girl' which she says 'goo gir'. She has lost the ability to nod her head for 'yes' and shake her head for 'no'. This ability seems to come and go, just like most other things. She cannot read, write, is not potty trained - the list goes on.
However, she is an amazing little girl and brings warmth to my life every day. She is so determined to do the things that she wants to do - she will keep trying and trying until she gets it... even if the way she 'gets it' isn't the way that a typical child would. She is usually happy, smiley, and bouncy. At the moment she LOVES tv. More than that though, she loves going outside. She could just be standing in the driveway with nothing to do, but at long as it is outside, she is happy.
Like with Toby, here is the list of the most important times in Chloe's life:
~ The day we told the social worker to shove it and get out of our and Chloe's life. That was good, and it made our family so much stronger to get rid of the person looking over our shoulder!
~ The first time that Chloe was rushed to the hospital when she was about 22 months old. The doctors said that she was about five seconds away from dying. They had to put her into a drug-induced coma for a few days and sent her to a specialized hospital in Cambridge. She was there for a week when they released her. I thought it was too early, and sure enough, a couple of hours after we got home we had to rush her into the hospital again because her throat was swollen (from all the tubes that had been put into it). We spent another week in Colchester hospital before the ENT specialist yelled at the doctors/nurses for not helping her more. Finally we got out after two full weeks in the hospital.
~ For the next few years, Chloe was in and out of the hospital. We even had an 'open door' policy with the hospital we were there so much - this meant that we didn't need to go to a doctor first, or even the emergency room if we were worried, we could just be allowed to admit Chloe into the hospital without a referral.
~ Chloe started walking when she was two and a half years old. I was the only one that saw it, and I was so excited! Nobody believed me that she had done it though until a week later when my husband also saw her do it!
~ She used to eat anything that she could find. She would pick at mattresses until they broke open and then she would eat the stuffing. She would eat her carpet - we had to put down wood on all sides of the carpet to stop her from pulling it up and eating it. We had to take out her bed as well, so she was left with nothing in her room at all - not even a blanket because she would eat that too. Nowadays, thankfully, this has stopped *knock on wood* and she now now has a bed in her room, along with a blanket and a couple of pillows. She doesn't always USE these items, but at least they are there for her!
~ Chloe was a climber, and she would climb on *everything*. At first we were excited about this, but soon it became dangerous. She climbed on the dresser in her room during the night, fell badly and broke her collarbone. ouch! Thankfully Ross and I are tres smart and we deduced what her problem was... otherwise the doctors would have had to x-ray her entire body to find out what was broken. Or if anything was.... its hard in situations like this having a non-verbal child. This also meant that all the furniture had to be removed from her room. Even nowadays, we keep her dresser in a different closet just to be safe.
~ Late 2007 - the first time she was ever rushed to the hospital here in the USA. I was at work, and Chloe went into a febrile convulsion. No matter how many times she goes into the hospital, I still never get used to it, and I still break down every time. Well, I do what needs to be done, and then when I can relax a little, I start crying and its difficult to stop.
~ Nowadays, although Chloe can't talk to us verbally, she understands most of what we say to her. She also has her own ways of communicating. She will sit down at the table when she is hungry. She will go to the sink when she is thirsty, or if she wants the tv on, she'll come and grab us and bring us to the tv. Its all really good as it is showing us that she is aware of what she wants, and trying to communicate with us the best that she can.
~ Chloe is a wonderful child, although it can be difficult at times. If she gets hungry enough, and we're not fast enough, she'll eat out of the garbage, or off the ground. If she does a poo in her diaper and doesn't like the feeling, she will undress and take it off. She doesn't really play with it anymore like she used too, but she still manages to get it all over herself. Sometimes she will undress for no reason at all. We have to maintain a constant vigilance of her and not leave her alone for more than 5 minutes at a time. To be fair, sometimes she will be okay being left alone for slightly longer periods of time, and sometimes she will not be okay even if you just leave for one minute. It all depends.
~ Chloe is in first grade right now, and is LOVING it. She loves other kids, and lots of activities. She is a very high-energy girl. She also has special education classes for physical therapy, and speech therapy.
~ March 11, 2009 When we woke up to get Chloe ready for school, she was in the middle of having a seizure. That was scary enough, but what was to come was even worse. Seizures we've dealt with many times in the past. The worst part was after her two day stay in the hospital when she couldn't even stand up, and she was so weak that we had to hand feed her food. Even so, she didn't eat much. This only lasted three days all together, but it felt like a lifetime. Chloe is always, always moving, she hates sitting down, so for her to just sit on the couch all day for three days (not to mention sleeping most of that time) is HUGE. She went to the doctor today for a follow up - she is down to 47 pounds right now, which means that she lost 8 pounds from the last time that she was weighed which was about four months ago. Hopefully she will regain this weight fast as she was already underweight to begin with. She is also now on anti-seizure medication, and has a neurology appointment in Milwaukee coming up. I'll keep you all posted!
~ June 25, 2009 Chloe has been cleared of any signs of epilepsy and is off the medication entirely, hurray! The medication was horrible for her and made her into a completely different person, so it is good from that regard as well. The most interesting new development is that Chloe decided the other day that she did NOT like what she was wearing. This was two days ago on June 23rd, I put Chloe in a cute little black skirt with a pink and black top. It was a cute outfit if I do say so myself :) Chloe, who is now able to go up and down the stairs in our house by herself, kept going downstairs to the family room and taking off her skirt! and one shoe! LOL She didn't take off her diaper, which she normally would have done, just the skirt. After two times of putting it back on her (and the missing shoe) I eventually deduced that maybe Chloe was attempting to pick her own outfit! So I changed her into a pair of shorts, and voila! everything was fine. I guess she does not like that skirt! To be fair, although it is cute, I am not entirely sure of it either. It was on clearance for 2 dollars, so I bought it but I can see why someone might not like it. Anyway, I'll try her with it again in a couple of days and see what happens... maybe she just didn't want a skirt on that day? I put a skirt on her yesterday though, and she was fine with it all day! So who knows.... Also I should note that Chloe has stopped saying 'goo gir' all together right now. I didn't even notice this until I read a paragraph above about her saying that. Ironically, she seems to understand more of what we are saying to her though, which may be why her expressive language has stopped. Hopefully we can get it going again!! :)
and so it goes... this page will be updated as new things arise in Chloe's life :)
