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!