chromosome 16

The doctor called. They finally got the results of the micro array tests on Max's chromosomes.
He has a micro deletion on chromosome 16. That is what is causing his late development. There are not many known cases but the ones there are all speak of mental retardation. That is what I've felt, all along.
It feels good to know what it is, to have a name... to me nothing else matters; he is still the same wonderful little Max. And I am not going to worry about tomorrow!
Robert was a bit upset; he was still hoping Max would catch up, even though, we did get the answer that would not happen, several months ago! He is coming around, though!
He is mostly worried what this will mean for Max in school etc. Afraid he will be teased and so on!

The doctor said this is just bad luck, neither Robert nor I have anything similar. I will not call it bad luck! I just can not say Max and bad luck in the same sentence:-)! To me he is nothing but perfect, as is Liam!!!
But I will admit, it is strange that both our children have difficulties that are not related!
I will write more later... Liam is not well, probably an ulcer, so he is in a lot of pain! Going to the doctor tomorrow!
Love you all!!!
https://www.facebook.com/video/?id=668848522
Dad and sis should be able to see these videos!!!

Don't know how to say this:-(

Max and I saw the doctor on Monday...we still haven't got any answers on his late development, except that they have found something on a cromosome. They don't know, however, if that is the reason. Robert and I have left blood for analysis to see if we have it too.
He is now, at 18 months, at a 10-11 month old development level. And a lot of things have happened since he started crawling!!!
That was not the sad news!
No, the sad news is that the doctor strongly discouraged me to travel to the U.S with a five week old baby in June.
Of course, I should have thought of this myself... I was just busy trying to figure out HOW to do it! Thinking about it, I realize that it is taking a lot of risks with that baby, especially considering infections on the air plane and the fact that a baby does need peace and quiet. Not to mention I will have a ceasarian cut that will just be starting to be ok!
He said to really think about waiting until the baby is at least 5-6 months!

I should have thought about this from the beginning, when I first found out I was pregnant...

We will have to find another time for us to come... maybe x-mas? It breaks my heart, I was sooo looking forward to go, but I realize the doctor is right!!!

Love you and miss you!!!!

School for Max

It's been soooo long since I wrote, since we spoke... Life here is upside down to say the least!!!
I'll get to that eventually!

What I wanted to tell you is that Max One Sock is now a school boy!!! He started last Friday. The first couple of days we just made short visits; he felt at home right away. After just a few minutes he crawled away from me and started checking the place out! He came back to see I was still there every once in a while at first but he soon took off and started playing in the other room.
On Tuesday and Wednesday I sat in the staff's room, to be around, had they needed me... but no:-)! Yesterday I left him in school and went home, biting my nails and almost HOPING they would call so I could come pick him up... but no:-)! He was so happy when I came, but after a few minutes he took off playing again.
I just came home from leaving him now... he is going to be there for six hours today! I miss having him around, but I am SOOO happy he is happy in school!
The other children are a little bit older, and they are all little caretakers! Today Malte, a 5½ year old boy, greeted him with "hey, Max, do you want to come play with the boat with us"!
I felt quite sure it would be easy to get him to like school, but not this easy!
You should have seen the joy in his eyes when we arrived there this morning!!! WOW!!!

Every pre school/day care have a special needs teacher. We met with her on Monday. She has all kinds of ideas of how to work with him, and they are setting up a plan to be able measure his improvements.
I am really glad, however, that a lot of progress has been going on these last few weeks,so that I can take credit for some:-)!
He now stands up against the furniture, walks if we hold his hands, makes more sounds (a lot of babababa) and understands more language! We use signs more frequently and he understands a few of them, but still doesn't make any on his own!
We are meeting with the doctor again on Monday. Hopefully we will get some answers to the cromosome tests we have taken.

Robert took him to get his first hair cut... I had meant just to trim the bangs and neck line, but Robert made sure he got his money's worth! So, now Max has very short hair!!!

I just got a call from one of the schools I am thinking of for Liam when he starts first grade this fall. I am going over there again to check it out. So, sorry, I can't finish this post! I have so much more to tell you! Will try to find time later on!!!!
Love you and miss you more than you can ever imagine!!!

Merry X-mas

Baby girl

We have now met with two doctors and one midwife and they are all sure the baby is a girl:-)!

snow

Radio

A colleague at the radio station was here the other day and did a story on Liam's new treatment.
See a video and hear an interview with me here:
http://sverigesradio.se/sida/artikel.aspx?programid=2345&artikel=4231113

You can hear both Liam and Max in it!

November photos

Still sleeps well at night!

Max is always running or crawling after Liam; he really loves his big brother! Liam is accepting the kisses and hugs quite well!

Liam made ginger bread cookies... they were delicious!!!



We rearranged Liam's room so finally we could fit his music sack in there. It is connected to his stereo and is vibrating with the sound of the music! He loves it! Actually we all do!!!:-)




No comment needed:-)!

Max got at little table and chairs! He is very into putting things in and out of boxes etc. and is starting the move the pieces of the puzzle back and forth!


Liam is trying new therapy to help his body relax! It works better than we could ever have imagined! Will tell you more later!

I made Swedish rolls:-)! Max's favorites!

And finally a picture from the ultra sound! They think it is a girl... we're going back in a couple of weeks for an extra check:-)!

more crawling :-)

crawling