Updates on Victoria Lily Joy van den Broek, born 120705.

Saturday, December 15, 2007

Blogging question


Tuesday, December 11, 2007


potty tng. etc

Potty training, though spread over a longer period of time than with the others, is not going too badly, all things considered.
The physio, whom we haven't seen for about 5 weeks, was VERY impressed that Victoria didn't have a nappy on.
The reason the physio came was because I was a bit concerned about Victoria's wobbliness in walking since the catherisation. At least she WILL walk now, but she falls over very easily. The physio showed me that there is a muscle in her right thigh which is quite tensed up - this is because of where the needle had to go in.
David and I (independantly of one another) have been online to see the options for the surgery which Victoria needs so as I started to tell him what I had found out, we compared notes!
I got a cute picture of Victoria with her little class in Leatherhead on Monday. It was suggested that since it was the last one of the year we might like to dress up in a Christmassy manner. it was planned that Victoria would wear her red dress but the lack of a nappy when she went for her morning sleep put paid to that! Instead she wore her 'Christmas tree fairy' dress (which Thomas bought for her when she was one and which she has been striving to grow into ever since!) - the tinsel in the hair completed the picture.
Will try and upload next....

Saturday, December 08, 2007


This morning Victoria actually ate breakfast. She ate a few chips for dinner and now she has ALMOST finished a hob-nob (at 3pm). this is the nearest we have got to a good day of eating for over a week. Still not to enthusiastic about drinking but when I respond to her 'no, no, no' with a 'never mind that it's YES' she meekly drinks a little! It's a good thing that she know's who is boss - it is safer that way!

Thursday, December 06, 2007


Victoria is a bit slow at getting back to eating and drinking. I'm having to be firm and counter her 'no, no, no' response to drinking. She's also quite reluctant to stand up and walk - I guess her groin feels a bit bruised - it certainly looks it! AT least she is a bit more alert today - not lying on the sofa but sitting on the floor. Her self-imposed imobility might make the portage session this afternoon a bit more focussed than it was last week! We had a successful 'lesson' time at 6.30am where she is learning to discriminate, select and sort red and yellow plastic bears.

Tuesday, December 04, 2007

Home again

I phoned the hospital at 8 on Sunday to check whether I ought to take Victoria in even though she wasn't very well. They said yes. Various tests - starting with an x-ray - were done. The most traumatic was, as always, getting blood. The good thing was that they took blood for the thyroid at the same time so that will save the necessity of having that done as a special event.
the anaesthetist came and checked her over and said she was OK for the catheter. A VERY long echo during which Victoria was very patient, still didnt' successfully get a picture of what was going on with the aorta - though the heart valve doesn't ahve a leak apparantly.
Sunday night was excessively noisy with a selection of intermittently squalling babies (sometimes as many as three simultaneously) and overly jovial nursing staff. I slept for about 1 and a half hours. The rest of the time I had cause, once again, to be thankful for my MP3 player. Victoria slept fitfully.
Monday morning came and a pre-med made victoria light-headed and amusing! It was two hours before she was back on the ward. The Doctor came to see me before I got Victoria back and said that it was a difficult case, ballooning was not possible because there is a long-ish length of the aorta which is uniformly 4mm in diameter rather than the ideal 10mm. This is causing her left ventricle have thicker muscle than it ought to have. Pressure to her head is more than 30% higher pressure than to her legs. The catheterisation allowed a picture to be made of the vessels around the heart to be made - radioactive dye was release at the end of the tube and pictures were (I suppose) taken. The surgeon (prob. the same one who worked on her 2 years ago) will have a look at all the information and figure out how to sort out the problem. It could have involved a 'cut and paste' job but one of the Drs. thinks that it is too long a stretch to do that on.
So we hope that sooner than later we will hear from the hospital again and go to get it repaired.
The second night in the hospital was necessary because Victoria had a slight allergic reaction to something AND was refusing to drink....
It led to the happy circumstance that I met another delightful (Christian) family with a daughter who has d.s. She was going for heart surgery this morning.
The next job is to bath Victoria and remove the plaster strips which were placed over the holes made in her groin yesterday. she's a bit reluctant to stand up and walk around right now - I think it must be sore on her legs.
+ Raising Down Syndrome Awareness -