Growth and development

[Guest guest]

Hi all,

It's late, I have had 2 glasses of wine and I am still paying for a visit to

the gym today (for my training for a run in 3 weeks to raise some funds for

the UK CHARGE family support group) so this may or may not make sense.

Some time ago, someone (Michele W I think?) asked for feedback on our

daughter's growth following some complementary/alternative interventions.

Well, we took to see her developmental paed 2 weeks ago. At the

last visit around 9 months ago, there were concerns about her growth having

slowed down significantly enough for growth hormones to be given some

considerations. Like lots of parents on this list, we are not wild about

chemical interventions if they can be avoided so in the interim,'s

cranial osteopath and homeopath (2 different people) paid some attention to

her grown in their work with her. We are pleased to say that at the

assessment 2 weeks ago, her growth was back on course so no hormones for our

girlie for now (fingers very tightly crossed that not ever!).

As I have kept saying, this could be due to the therapies or her diet or a

combination of everything ( I am a great believer in if possible, try

everything and hopefully something will work). We are quite relieved at

this stage so passing on the good news.

On another matter, she is doing really well with her expressice language.

She is loving being read with or to and signing what she wants (OK, with

refusal for us to be pulled to what she is asking for until she signs it but

at least she is getting the idea that one needs to ask for what they want

and not just drag us to the object (quite hard when she sits at the table -

drink or food? Now she can tell us some of the time). We are working her

quite hard over the summer holidays but we can see the results so it is

pretty good. We also recently found out that she has no semicircular canals

so we are very busy working on balance as well. Luckily, she is a great

climber so we are very busy at adventure playgrounds etc. It can be quite

scary watching her climb up a ladder and negotiate a rope bridge but I try

really hard not to rescue her and she loves coming down the rope at the end

of the course. Of course my hair is now more grey than it was before the

school holidays!

For those of you going through concerns about development, know that we do

understand the frustrations and worries. (now 4) was not much

different from a lot of children with CHARGE. She had a slow start (not

sitting unaided at one, never crawled, head support difficult for long time,

communication ongoing issues as understands lots but up to recently able to

spontaneously sign very little, only started walking 10 months ago, the list

goes on but we can see now that she is having a big catch up spurt). The

endless medical appointments always come in the summer months (partly due to

my strategy of trying to ensure she does not miss too much school but this

leads to hectic and pretty stressful summer - what with the 2 year old

toddler to contend with too!). Sooo.........., life at the /Njeru

household is pretty mad right now, but we are lucky because (a) I have a

fantastic manager who has agreed to my working one day per week and taking

leave for the rest of the summer (down side being I still have a 3 day

caseload but he is happy to help) and ( having a helper from the local

deaf-blind team in social services helping out 2-1/2 days a week so we can

give both girls some quality time and does not regress during the

long holiday. It may have taken lots of work to access this but thank

goodness for it! It is impossible to take the 2 girls out if only one of us

so we are very grateful.

On that note, I really need my bed now so have to go but wish everone well.

All those struggling with issues, hang in there, it does usually get easier.

Sorry to do a mish mash posting but don't have much time right now for

more than an occassional posting thanks to the 5K run, my post-qualifying

studies that I have been putting off forever, the summer holidays and

having decided that lone play is not for her after all and she wants

parental involvement most of the time (and so does Elly, always at the same

time as her sister!!!!!). Life is sooooo hectic.

Flo