Testing results!

We got the results back from Laurens developmental testing and I feel much better than I did last time. They don't have a list of what skills are to be done when because it is a bit more than that. Some of it depends on how long it takes them to do what they want. Some it is how they do it and some it is how it is asked and understood.

I know that she didn't get some of the stuff that they wanted but they were things that I had not taught her to do and won't be doing it for a while. One whole section is about trying to get Lauren to open a small pill bottle and then taking a bead and putting it in the bottle and taking it out of the bottle. Another was giving her pennies and having her put it in a piggy bank. She didn't do these and the tester had to stop her as she kept trying to put the stuff in her mouth. I don't let her play with small beads or pennies and I will not give her a pill bottle and teach her how to open it. I will give her a larger bottle for her to learn to open now but defiantly not a pill bottle. It was even a medicine bottle and to me it is wrong to try and teach that to a small child.

She was tested 6 months ago at 10 months old. Now at 16 months she has improved. First for cognitive skills ( I still have a problem with this term as to me it means how smart she is) tests how she is able to to certain things. Some like the pill bottle and piggy bank she wasn't' able to do and a few things because she isn't walking yet she wasn't' able to do so to me it is a bit unfair. How can she be considered not able to do it when she can't do it due to being behind in another area. Anyway she was calculate to be in the 9th percentile and at a 12 month age. She did go up by 5 months though so to me gaining 5 months was great. For her motor skills she did good too. Her Fine motor skills she went up 5 months as well and is now considered 13 months. She is in the 1st percentile though because her gross motor skills only went up 2 months and she is at 8 months for that but that is where I felt she was. She is improving hugely now though so in 6 months when she does this test it could be a large jump. Something tells me that she will be close to being on track by age 2. It was her language that blew me away though. When she was tested at 10 months she was in the 50Th percentile and was at 10 months. Now though it is great. For receptive she went up 9 months and is at a 19 month old and her Expressive is at 21 months. She is in the 92Nd percentile. I knew that she had words but I was blown away. Part of the report stated that they even heard her have spontaneous 2 work utterances. I was confused as I didn't think I had ever heard that. Tony had to point out that "good girl", Uh oh, and "got it" are all 2 words together. I guess I just thought it was one work or some reason. Oddly I didn't' use any of those words to count her words she has.

Needless to say I am very happy with how she tested and can't wait to see how she does in 6 months when she goes back. I think that she may be close to walking by then.

Developmental testing day

Lauren went for her testing today. She gets it done every 6 months and today was it. I wasn't looking forward to it at all. This would be the first time that I would have to drive her in to Children's as Tony was working afternoon shift. He ended up being able to come but had to take his own vehicle so that he could go straight to work. These appointments always happen when it is nap time or she is fussy from fasting before blood work that is done at the same time. I didn't really want to drive in myself cause I hate traffic and I hate it even more with a screaming upset kid in the back seat. Lauren is still rear facing so I can't really entertain her either while I drive. As it turned out she fell asleep about 2 minutes from our house and slept till about 5 minutes away and didn't get upset when she woke up at all. First we went to the developmental test. They have all sorts of toys they give her to see what she can do with them. There is a certain thing they want her to do. Every area has a section and once she misses 5 things that they want her to do in a row they move on to the next section. There was only a few problems. One Lauren is really social and she can't understand why she is supposed to play with certain things on her own when there was 4 other people in there with her. She wanted them to play with the toys too so she kept giving them to us. One area was a book that she had to point to pictures in to show that she knew what certain items were. She wanted to use the testers finger to point to it though instead of her own. She also would drive the tester nuts cause she would miss 4 in a row then go on to do 3 more then miss 4 more. For example she wouldn't take a car and push it on the table. Apparently this is a 12 month skill. She has never pushed any of her toys on wheel around. She knows how just chooses to pick them up and move them. But she has no problems pointing to body parts. 4 parts is a 15 month skill, Lauren knows 14. So I haven't got the official results of these parts and I won't for a few weeks but she didn't know how she was going to score it as there is so many 12 -13 months skills she just won't do but she will do ones that were way ahead. It isn't that she can't do the skills she just won't. When it came to language she was way ahead of her age group. They put on the table a bear, book, baby, ball, cup and spoon. She was just supposed to pick up the item they named. She would pick it up but also say the name of what they wanted too. The only one she didn't say was spoon. The tester told me that she was really ahead for 18 months. I told that was good but she is only 16 months on Monday. She had been testing her as an 18 months old. This changed everything. She had to go back and check some more things on the test. It did show that she is really improving though as she was now quite a head on a few things. We know that she is still behind on some cognitive stuff but most of it is because she won't do something not because she can't. She then tested her on her gross motor skills. This one we know she is about 7 months behind on. She can sit and get her self to sitting. She is also pulling herself up to her knees now. She performed great today though and was doing her army crawling and was getting her knees up so I am sure that she will be on all fours by the end of the month now.

All in all I know she is doing great with her development and she will catch up. It is just hard to watch sometimes. She has the mental capacity to know what she wants to do just not the strength to do it. Last night she was trying to stand up at the couch and get the papers on it. She could get to her knees and she was shaking trying to use all her strength to get to her feet. She was almost there and just gave out and fell backwards. I thought she was going to cry in pain but instead she rolled onto her tummy and put her head down and cried. Not crying in pain but she was sad. I didn't know that kids at that age had emotions. It was just heartbreaking. I picked her up and just held her and cried with her. I can't help her with it and it is just her strength she needs to build up. She is doing it fast but I just wish there was more I could do.

After the testing we had to go and get her blood work done and that was great. Getting it done out there is so different. They get the vein on the first try and they are quick. We are in and out in less than 3 minutes. It is so easy on Lauren and that is much better for her. We then met with the metabolics Dr and we were done. There wasn't much to do with her at all. We just signed consent forms to allow Laurens EEG videos to be shown at a conference in Istanbul as she is actually a huge medical breakthrough. A disorder that had only 100 people world wide now has almost that many diagnosed since Lauren. It has also saved quite a few babies that presented the same way Lauren did. Before there wasn't a way to save the child and they would end up dying and being written off as SIDS. I keep thinking back to the night I went into her room and got her to eat. If I hadn't gone to get her and waited for her to cry for me I would still be waiting. She would have died in her crib all alone as her blood sugar dropped too low. I am still not sure what made me go in and get her and then rush her to emerg but I am so thankful that I did. I am also thankful that so many parents don't have to go through what we did now that my wonderful daughter pulled through and is proving all the doctors wrong.

As it turned out she then slept the whole way home for me too, she was great all day and I was dreading it for nothing. I am really enjoying my time with her lately as she learns new stuff every day and she is just so cute!

A little update on Lauren

Well I have many people ask for an update so I thought I would do it in a post for everyone.

Lauren gets regular appointments at Children's to see her neurologist and her metabolic specialist. She goes every 2-3 months. Then on top of that she goes for blood and urine tests monthly. These are always such a pain for me and the day is pretty much written off. She has to be fasting for these so I find that I want to go first thing in the morning when she wakes up it is best. I go in to get her and put the urine collection bag on her. This would be so much easier if she was a boy, so as not to be so graphic, boys can aim into the bag. Girls you have to make sure it would cover the whole area that urine would be coming from if leaking slowly. The bag sticks well but if the area is slightly wet it doesn't. We then get in the car with her getting fussy as she is hungry and wondering where her formula is. I have been able to make appointments lately but they are starting to tell me that they won't take them any more as she is getting older. That would mean once we are there that we have to wait up to 2 hours with her screaming cause she is hungry. The tests have to be done after fasting at least 4 hours and has to be done before noon so it only will work first thing. They almost never get the blood in the first try and have to poke her at least 3 times. Once they finally get it then I can feed her and hopefully get the urine sample if I put the bag on right. We are normally there from about 7-10 by the time they get us in and figured out what needs to be done and get the blood. Imagine what is going to happen if we don't have an appointment. I could take her directly to children's for this instead of a local lab but driving to downtown with her crying wouldn't be so great either. She is then fussy and cranky all day after and won't nap or anything.
Every 6 months she will get developmental tested as well as a spinal tap. These we aren't looking forward to at all. I know the risks and don't want her to have to go through the awful tests.
She is on her special low lysine diet and it seems to be working for her. We have figured out foods she can have and have ordered some special stuff for her. The dietitian keeps raising her level that she can have based on what her blood and urine is saying so we are way higher than we had been. I have no idea if the diet is actually doing anything for her though. It is supposed to be helping her to not be behind developmentally. There is only 4 kids world wide on this diet though. They all have a different form of the metabolic disorder and all were diagnosed after they showed signs at 10 months and older. All of these kids had learned to do things and then lost them after hospitalisation but Lauren was different she hadn't learned anything yet so didn't really lose the ability to do them. The only things that she is behind on is her gross motor skills and that is just strength in her muscles. Anyone would lose all muscle strength after not being able to move any body parts for 2 months. She is completely on track mentally she is just behind but catching up on moving. She can sit on her own and get to sitting on her own. She actually uses this to get around but sitting up and then spinning around and laying down then sitting again. She does the army crawl but doesn't go to far yet or too fast unless it is something she isn't allowed to be playing with. She is doing everything in the right order and really on track just a few months behind. I know she will catch up. She is even ahead on some things like her social skills and knowing all her body parts. She will point to them when you ask her. She knows toes knees, elbows, fingers, eyes, nose, mouth, teeth and tongue, hair and ears so she is actually ahead as doing all of these is about 20 months skills. She can drink out of a cup without the sippy top but she then figures that she can blow bubbles in it so I think it is safer for now to let her have the sippy top. She will use a spoon for pudding but not very well and prefers to use her fingers. She has the pincher grasp down perfectly but tends to just shove the pasta in when she gets that as she can get much more in at a time. She can say a few words that others understand and is trying to say so many more. She is always copying us even if it doesn't quite come out right. She can tell you what a duck and a cow say and will copy you if you say Baa for a sheep and oink for a pig but won't say those on her own. She sleeps through the night although she goes to bed at about 9 and gets up about 6 and it would be nice if it was just a little later. She loves swimming and the pool and loves putting her face under water. She tries to help dress herself and will put her own arms in the shirt for me as long as I put it over her head. She has finally figured out that sitting in the bathtub is much better and she can splash a lot better too. She is getting stronger and stronger everyday. Her attitude is getting stronger too which can be a bad thing but I think in the long run it will be good for her.

This was meant to be a short post but it ended up longer than I thought. I hope this answers any questions though but feel free to ask if you have any more.

Way to long

It has been way to long since I have posted. I just don't know where the time has gone. We have moved into the new house and it is still a very unorganised mess. We also took 2 weeks of holidays to go up to the lake and just enjoy. The weather was nice and hot except for the weekend that we came home. We went swimming almost everyday and Lauren loved it. She would start out in her life jacket floating around then we would take it off so we could dunk her under the water and get her used to putting her face in. I think she preferred to have it off. We had her in some floating toys and she would try and jump out face first. We sat her on the edge of the dock and had her jump in to us and then just jump into the water herself. She loved it and never wanted to get out of the water. The more she could get under the water the better. We also took her tubing with us. She wasn't too sure of it but I think that was because of the life jacket. It seems that they never fit right when a kid is sitting.



The house is getting there but is taking longer than we wanted. This week we have the alarm place coming to set it up then next week we have the concrete slab people coming to lift the basement. This will take us a while to get ready for. We have to lift all the carpet and the lino downstairs and get all the stuff in those areas out. After it is all done and we have more carpet and lino put in then we can organise better as we can put stuff in those rooms.



As for Lauren, she is doing good. She can now sit up all by herself either from the crawling position or from her side. She doesn't crawl exactly but does army crawl for stuff and moves very fast if she is motivated. She is defiantly improving everyday. Her speech is getting better. We don't always understand the words but she is definitely trying to copy everything we say. Also her signing is getting great. She tells us more or all done for everything that she does or wants. Now we are just working on stopping the whining. That is the one thing that drives me mad. She is learning though.



I will try and write more often. I get lots of great ideas in the middle of the night while I am in bed but by the time I go to write them I forget what I wanted to do.