23.01.2007

Web blog entry number thirty-five.

Freya is changing everyday, her mimics, her big motor skills and her levels of understanding. However I believe she has always been able to understand much, she just couldn't show it. Now she has more "tools" to show what she knows. For example I asked her to repeat what she had learned for the photo and she did. You can see the results on the picture.

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She is very proud of it too, when we praise her for it she will immediatly do it again. She will also perform her new trick when her brother is getting praise. When Terje told her that she is indeed taller than Axel she positively beamed ;)

As for her mimics, she used to have this strange smile, a very "made" smile, simply because she didn't have the muscle strength to really smile, she can smile now however and you can see the difference in het cheeks. Also her eyes seem too improve, all by themselves really. We still have to go to the eye doctor to get more patches, we have time there on thursday, then we will also get the überweisung for the eye clinic. Febuary will be a busy month, U7, eye-clinc and the start of her logopedy. Of course früforderung and krankengymnastik also still continue. Busy, busy, busy!

12.01.2007

Web blog entry number thirty-four.

So many things happening on the Freya front. We have been to an eye-doctor and we have started this "patch" therapy now, you patch one eye so the other eye needs to work harder. We will go to a special eye clinic later this month.

She will start logopedy in febuary, so that is exciting.

Freya can stand up really well now, holding on to something. She climbs onto the chair and sofa and off again without help. The fysiotherapist has given a new exercise, Freya can now stand with the big practice ball and walk while roling it forward. It will be so great to see her walking around.

Talking to the frühforderung therapist we agreed that Freya is actually quite well on scedual, she is not that far behind anymore. He said that in his opinion there is actually very little "wrong" with her, if anything. Which is always good to hear.

We have visited a genetic research centre and they have examined Freya, they couldn't find anything that would point towards a syndrome ( no big surprise... ), but we will have a chromosome test done anyway during the MRI because according to them it works like this in germany that once the possibilty of a syndrome has been mentioned and, even worse, put onto paper, you should have those tests done, only to contradict that, so it won't follow her for the rest of her life. But they said clearly that in their opnion an MRI is the most important next step in trying to find out what Freya's problem is.

In febuary we will start the lopopedy, like mentioned before, this will take place in the SPZ from the same hospital where I had Axel. So not the EVK anymore, we will also have a doctors visit before the logopedy starts. This doctor comes recommended by the doctor that delivered Axel, he said that she has much experiences with cases like Freya, children born with asphyxia.

Yesterday she had a second pneumococcal vaccination and she is a bit affected by it it seems, she is tired and this evening she had some pain. We didn't realize it immediatly as she hadn't been complaining during the day, but ofcourse when your mind is occupied it is not so bad, but when you are in bed with nothing else to do that would distract you from it...so finally she went to sleep after we gave her some paracetamol juice ( Paracetamol AL Saft ). Poor mopje. Hopefully she will feel better again tomorrow.

Anyway, many things coming up, so lets see what we can report next time!

27.11.2006

Web blog entry number thirty-three.

Freya has had another vaccination the 22nd of this month, the last one of all the basis vaccinations. According to our kinderarzt she was lagging behind on her vaccinations a lot, aparently these things don't have a european standard and they vaccinate differently in Finland, less, so it would seem.

She has made some great progress again, she can now stand up by herself holding on to chairs, closets or whatever is close by, even mamma's legs will do. Not only does she stand up, she can also climb onto chairs and the sofa.

She has also started moving her mouth more when making sounds and some subtle changing are occuring there too. She can also do this game now where you, when making one long tone, can make your voice tremble like an indian with your hand against your mouth, or when you drive a bumpy road. She is growing fast now too, already growing out of size 80 and into 86 :) ( see newest photo's )

17.11.2006

Web blog entry number thirty-two.

Freya is recovering from a flu she caught in the Netherlands, it was bad only one day actually when she had fever ( about 39 C ) and she was shaky and weak, reminded me a bit of a raggdoll.

She has learned something new now, she has started to put things into boxes and bags, so she has these block, normally she would just throw them all out, but now once they are out she actually puts them back in and she is smart about her new skill too. There is this paper waste bin she just loves to take paper out and after breefly reading it, eat it and this is ofcourse not allowed, but she has found a reason to be there now other than the paper, she simply throws in one of her toys, so she just has to take it back out...of course.

She has a similar trick for places she shouldn't go to. For example the hallway, she can be there when we are, but preferably not when we are not. She just messes up the shoes and tries to find wires to pull or, even better, get to the phone fast and dial some number so that mommy or daddy will have to apologize to whomever picks up the phone on the other side...Anyway, how she does this is by pretending to be interested in some toy or item and throw it infront of her and, naturally, she has to follow to toy, so it gets thrown all the way, exactly to, infront of...the phone.

She is getting stronger all the time and seems to be ok with having a new brother, she only gets a bit annoyed when we talk to nicely to him. Or when he feeds too long ;)

26.10.2006

Web blog entry number thirty-one.

She is so very sweet with her new baby brother, very curious and she would love to just squeeze him to pieces. She claps in her hands when she sees him, tries to give him her pacifier and gives him kisses. She likes him best when he doesn't cry, when he cries she gets spooked. But I guess that, in a couple of weeks, having Axel around will be the normal situation.

12.10.2006

Web blog entry number thirty.

Just a quick update on things-Freya-can-do and one of them is sitting! All by herself, she crawls nowdays and sits to play with things, to eat or drink something or just to look at things from another perspective. It actually started on Terje's birthday ( 4.10.2006 ) that she was trying it out, but now she is doing it all the time and she can also balance herself properly and when she does tilt over she supports herself so she doesn't really tip over. It's wonderful to see.

5.10.2006

Web blog entry number twenty-nine

Freya had a check up for her burn wounds today and the doctor was very happy about how it has been healing. She also got a vaccination, a meningcoccal vaccination. The vaccination was called Menjugate® Kit (Meningococcal Group C Vaccine) and is indicated for immunisation against meningococcal group C infection.

Also, Freya has gone through some major development, she has started to actually crawl on hands and knees! And not just two or three movements either, no, she crawls through the whole house leaving her trails of destruction. And I have to say, she knows really well what it means when I say "no" or rather "nee" considering the fact I speak Dutch to Freya. Most of the time she actually stops, for example, when she is planning to eat a plant or atleast "taste sample " it and I notice on time, so before she has bitten, she will not do it. It probably has something to do with her own insecurity about wether or not it would be a good thing to do to start with and then when I tell her "bad idea", the scale tips over to "maybe not".

She often looks at me for approval, also if she finds something on the floor that does not immediatly resemble food she turns on her back and tries to make eye contact with me to show what she found and she also voluntarily gives it to me, something she won't do with anything resembling a bread crumb for example. With people she also does it, when people touch her, for example the kinderarzt examines her leg, she will look at my face to check if this is something to cry about. It works when there aren't any needles involved...

30.09.2006

Web blog entry number twenty-eight

Poor little Freya, you think you have been through the worst and then something bad happens. Freya had decided to try standing up for the first time with a little help from a side table. Unfortunatly there was a glass on that side table and a thermoscan with tea. The side table tilted and both the glass and the thermoscan fell off. Ofcourse due to the glass I picked Freya up with the speed of lightning, however, it wasn't the glass that had hurt her, it was the tea that had slowly escaped from the thermoscan...both her left foot and lower leg were wet and as soon as I noticed I took of her sock and pants, the skin looked red and eventhough Freya wasn't crying I knew it wasn't good. I took her to the bathroom, grabbed my phone on the way, and with one arm I held Freya under the cold water tab and with the other I called the kinderarzt. I called Terje who rushed home and we went to the kinderarzt, the good news is that it was a second degree burn that will leave no scarring and will be completely healed within three months, it took two days of flammazine and now she can be without bandages. At the latest check up the kinderarzt said that it couldn't have healed any better and Freya doesn't seem to be too bothered by it, crawling and climbing around as usual. Now that the blisters on her foot have burst she is a bit more sensitive about who can touch her leg though. But all in all it looks like we got away with some discomfort for poor snoepje and a big scare for mamma and pappa. Not to mention a lesson learned. Eventhough you might think that a thermoscan is safe as it should be closed, unlike a tea pot, it's not.

When I called to tell Opa and Oma about Freya's accident they told me that they had just recently heard similar stories from two people. Two young children that got hurt by hot fluids from a thermoscan, only those stories were worse. Hopefully when you read this and you have had a thermos in close facinity of a baby or small child, learn from my mistake, and don't let it happen to your child!

On a positive note, Freya is totally fascinated by my big stomach and loves to put her head against it or use it as a drum. She infact pulls up my t-shirt or whatever it is that I am wearing as a top and pulls down my pants some, she even unties knots ( ! ) to achieve these goals. She is changing a lot, showing much more emotions and really trying to crawl on hands and knees, also she practices sitting and as mentioned before, standing up, or atleast pulling herself up against anything that even remotely looks useful as pull-up-tool. She has become a bit more difficult with her sleepy time, she tries to crawl onto me and sleep on me one way or another and me not allowing that causes some conflict of wills, but ofcourse, in the end, mamma and sleepyness prevail ( after a few hours... ).

She is a smart little cookie, you can tell she understands much of what you tell her, in Dutch aswell as in Swedish and English. The therapist from früforderung even thinks she understands German, either that or in some way she is capable of logically deducting what it is that the person in question wants from her. Either way, pretty cool hm? She mimics everything that she is physically capable of imitating. For example, clapping hands, waving, blowing kisses, making kiss noises, click with your teeth, making simple sounds and laughing out loud.

19.09.2006

Web blog entry number twenty-seven.

In the morning Freya had an appointment with a logopedist, this was merely a meeting to see for the therapist wether or not she thought she could help Freya. But to her Freya's situation was so unfamiliar that she recommended we would look for more specialized help. So she will call our kinderarzt and speak with him about this. She said we would hear from her this week.

In the afternoon Freya had früforderung, the therapist let her come to him so it was pretty much all ok with Freya, it was funny to see though that she really comes for safety to mamma now and then. She has started trying to crawl on hands and knees a lot now and she also pulls herself up on anything that crosses her path. She can crawl over obstacles ( like mamma's legs )and expresses her emotions much clearer. And instead of getting spooked when I laugh out loud she now starts laughing too. Yes, she is really changing a lot. The therapist thought that maybe, since "stuff in the throught " aparently needs to drop down, speech will come once she stands more, as "stuff" gets pushed down more then.

It's all wait and see really, but we are kind of getting used to that state...

31.08.2006

Web blog entry number twenty-six.

This morning Freya had a doctors visit, the kinderarzt, and we discussed Freya's "treatment plan". Now I have the address to a speech therapist and will make an appointment and I will also make an appointment with an eye specialist. The kinderarzt has signed a paper approving frühforderung and will fax it so that Freya can get that as soon as possible. Then we also discussed a chromosome test, but this doctor feels that this is absolutely not necessary. He does not doubt that Freya's problems are purely birth related and does not believe she is a "syndrome child".

And then, poor little Freya had not one but two vaccinations! A repeat vaccination for the measles and one for pneumococcus [ Streptococcus pneumoniae ]. One in each leg. That was ofcourse no laughing matter. But neither is the risk of getting the measles and it seems to be so that there has been/still is a measles epidemic in Germany .
with nasty complications therefore they prefer to make sure that children don't run any risk of getting it. They even vaccinate children under 11 months of age.Hopefully she won't be affected too much by the vaccinations, last time she had the measles vacc. she was moody for about three days and she had fever in the evening. In five weeks she'll have another vaccination ( not measles ).

22.08.2006

Web blog entry number twenty-five.

Another busy day is almost over, Freya is taking a bath with her daddy while her mommy informs the world of news concerning the little "snutteplutt". Today we had an appointment with her childrens doctor and it was very enlightning. He doesn't believe in a syndrome at all for example, he says that if she does have one it will have to be an extremely rare one because the obvious ones he can rule out. But we agreed that going to a genetic specialist to have her looked over couldn't harm. His opinion however is that the difficult birth and the post natal asphyxia ( the apgar drop from 5 to 3 can infact cause all these delays and its so that all we can really do about that is give her as much help as possible, like fysiotherapy, speech therapy, special therapeutical playing and a check up from the eye doctor. He said that one out of two children who are born when they are full term, with good birth weight with these kind of complications always suffer from some problems.

We were also visited by a social pedagoge and she gave us loads of addresses with specialst help and she also said she doubted a syndrome and that she had seen enough children with start problems due to complications at birth. She was really nice and helpful, Freya liked her almost immediatly, they were clapping hands together in no time ;)

I will now call to make an appoinment for "early help", these people will come once a week to play with Freya in a therapeutical way, stimulating motor skills and speech for example.

I feel very good about these things all starting to happen. By the time Freya's little brother will come into the world I hope we will have a good routine.

I think Freya will, eventually, be very happy with her sibling, I think that because of the low age difference they will mean a lot to eachother.

Feel a bit more positive again about her development, she is showing improvements on an almost daily base, the social pedagoge thinks Freya will be just fine :)

20.08.2006

Web blog entry number twenty-four.

The visit to the special centre didn't bring us much news except that Freya's delay has become bigger. So the doctor thinks it might not "only" be the post natal asphyxia that is causing all this. So she won't have an MRI scan yet, first she will have a blood test to check for chromosome defects. Than if that turns up nothing than he wants to hospitalize her for about 2-3 days after the

baby has been born and I can be with her in the hospital and then have all tests done at once, including an MRI. I don't know what "other tests" he has in mind, but we will receive more information on that later.

Other news, she has started to take her socks of whenever she can and keeps books around her at all times. I have tried telling her that one book at the time works better and when she didn't listen I read all the books with her that she had collected around her and she laughed out loud with every new book that I picked up. The things she finds entertaining ;)

I know she doesn't find doctors entertaining at all. Apart from the special centre I spent some time with doctors, all in all, doctors three days in a row and everytime almost whole day parts and now she is having these nightmares again and doesn't want to sleep alone in her bed. She seems to have the same reaction everytime we have doctor intense days.

I think the doctor from the special centre is right, there is definatly more going on than "just" post natal asphyxia, but if it is chromosomal I am not sure, try psychological. You get all the same symptoms Freya has when you look up birth trauma. Check this site for example. It describes all problems Freya experiences, more so than any syndrome I have found information about. But lets see, we have to keep an open mind and hope for the best. Whatever the outcome, Freya still has a big struggle ahead of her and I intend to stand by her every step of the way for as long as it takes, even if that means the rest of my life.

14.07.2006

Web blog entry number twenty-three.

Freya has endured the holiday trip well, can't have been easy for her sitting in a hot car for long hours and being in a different place almost every night, not to mention all the different people she met. She was super social though and despite little moving space has been developing both physically and mentally. She has started to try and get up although she is clearly too wobbly for that. Lately she has started to not only listen to music, but also moving to the music. We can clearly see she is lagging behind in development, but she is progressing, not standing still or loosing skills. In august we have another visit to the special centre and here we will decide if she needs more help and additional testing such as an MRI. So more on that later!