A Mail Day is a Good Day

Here is little A admiring her Valentine card from Auntie M. She is quite pleased as you can see.

She is doing well. Her gross motor development is her weakest area overall but we have refocused our efforts to include crawling again and I think it's helping. We're using the stairs. She can't sit back and start scooting and it's easy to incorporate a few times per day. The crawling focus was prompted by a book I picked up and some families I ran into who use the neurodevelopment approach. There are at least two camps on this topic. One says although crawling is important, any movement is progress. The other says that if they replace crawling with scooting or some other creative method of getting around, there will be neurological damage. I know there are lots of 'typical' kids who don't crawl but perhaps for kids with an extra chromosome, it makes more difference. I don't know. I did spend a little time trying to find out but it seems that there is no proof either way. So! we are trying more crawling because it's not going to hurt. If you have been through this debate and have any comments, I'd love to hear from you.

In the speech department, we are having lots of fun. We recently started with a speech therapist and she had us do an inventory of A's language. She has about 15 spoken words and 50 words including signed words. This means, I'm the bottle neck. If I had 100 signs I'm sure she would too, so I'm trying to step it up. We're using the signing time series and it's perfect. Both kids like it and it's not too annoying as far as kid stuff goes.

Sleep is better although I hesitate to get too excited because things are always changing. There are teeth coming and I know that is part of the issue but we also get some long stretches. She is sleeping in the play yard porta-crib in our room and we've turned up the heat at night. We also night weaned and moved the morning nursing time to another room to distinguish when the day really starts. One or more of those changes is helping and although I'm curious which was the key, I'm not willing to experiment to find out.

We are spending more time at playgroups lately. There is one nearby with a nice structure including free time, snack time, book time and singing time. She eats things there that she will not try at home and she loves the whole scene there. It's good for me too.

Oh yeah, I cut the tiniest lock of hair from her bangs this week. It was in her eyes all the time. I always feel a pang cutting hair. Especially the first one.

Hey, You eating that?

Sleep is improving, thanks for asking. I hesitate to say we have it conquered because as you know, if you don't like what they're doing, it'll change and if you like what they're doing, it'll change. For example, after quite a few nights of 7 hour stretches (yay, yay, yay!) she slammed us twice with 4's and 5's. This wouldn't be so bad except we get confident in a pattern and we start to stay up late. Always a big mistake for me.

In other development news, we see the IDP consultant about once per month. We've seen a physiotherapist twice and we now go every two months. We are grateful for these services, but I do worry that the physio especially is not frequent enough. Both times we've gone, they have pointed out subtle but important adjustments I could make in our daily habits; how we pick A up, how we guide her to change positions, how we help her with supported standing. The worrier in me has been surprisingly quiet so far in this journey but it's peeking out a little now as we see the delays more. I found an excellent book at the DSRF library. It's called Time to Begin by Valentin Dimitriev. There is an updated edition in the 2000's. It's been really helpful. It's easy to read and very practical and it's armed me with more knowledge and vocabulary for the professional visits. It is WAY more useful than the book that arrived with the diagnosis. He is also very upbeat about the possibilities for people with Down Syndrome.

So, we are working on leg strength by doing soft-kneed standing. We are working on hands and knees position and we are working on moving from lying down to sitting. A doesn't like the hands and knees exercises at all. She always wants to be grabbing something and investigating. I think this is great but it's hard to get through the stuff we're supposed to get through. I try to keep it opportunistic rather than drill-like. There are days when I just want to play. So we do.

Eating is going well but there is a shift. She is no longer content with baby mush. She's figured out that we're eating more interesting fare and she wants it. She's grabbing it right out of my hand. It's great but she often gets distracted by the self feeding and she's eating less as a result. I'm sure it'll change but feeding times are a little long right now.

Elimination communication is going well for solids. We hear the signal and head to the toilet. She knows what to do. I'm still amazed by this but so happy. I spent part of last week upgrading her diaper supply. We're using cloth and I was combing craigslist for more. We found 12 brand new organic cotton prefolds for $35. We should be good until she's done. EC for liquid is still pretty casual. I try once per day after the morning nursing session. Sometimes it works, sometimes it doesn't. We still reinforce the pssssss sound when she goes in her diaper but I'm wondering if a sign would work better since visual learning is easier.

In the fine motor department, her pincer grip is starting to show up with all those finger foods. We don't see it much elsewhere but she's definitely working on it at the table and as she spends so much time there, I'm not focusing on it otherwise.

Communication has been interesting. She signed 'milk' at six months but didn't really do it consistently and she hasn't picked up any new signs. I was explaining this to another parent at a playgroup and suddenly she signed for 'milk' (which sometimes means 'tired') and it was unmistakeable. Then at a birthday party, T was feeding her some yummy bread. She turned to look up at him and said 'Dada' and then did the 'more' sign. It's not wise to get excited by one demonstration of progress but hey, it just happened and it was pretty cute.

For those of you unfamiliar with the age range for developmental milestones, here are a few to give you an idea what to expect. This is from the above-mentioned book. Sorry for the formatting. I did it in word and pasted the source in here so it's a little wonky.

	Children with DS		“Normal” Children
Milestone	Average Age in Months	Range in Months	Average age in Months	Range in Months
Smiling	2	1.5 to 4	1	0.5 to 3
Rolling over	8	4 to 22	5	2 to 10
Sitting alone	10	6 to 28	7	5 to 9
Crawling	12	7 to 21	8	6 to 11
Standing	20	11 to 42	11	8 to 16
Walking	24	12 to 65	13	8 to 18
Talking, words	16	9 to 31	10	6 to 14
Talking, sentences	28	18 to 96	21	14 to 32

On the cuteness milestones, she broke the monitor, so we only know she's off the chart.

IDP Visit # 2

Earlier this week (Mon) we had our 2nd Infant Development Program session (IDP). This time the IDP consultant (C) actually assessed A's progress against a list of developmental milestones. She gave me the choice of which style of milestone list to use. There were three types. Two were quite broad and one was more detailed. I chose the detailed one because it was easy to interpret and very specific. For example one of the milestones is 'holding a toy for a certain period of time'. This detail also gives me ideas on what to work towards between sessions. The danger for me is that I'll get overly anxious if and when she is not meeting a milestone readily. Please, once this happens, send me encouraging messages.

The good news is that for now, she is doing all the things expected for a typical baby her age. The list didn't mention grabbing parents' glasses, but she's quite adept at that.

The IDP consultant says that usually kids with DS fall behind between 6 & 9 months old. The first milestone they are usually late on is getting themselves into a sitting position and sitting unassisted. The best attitude for me is to expect that she'll do it all and just be patient.

Here she is at Farmor and Farfar's place playing coy. More on our visit to Victoria in an upcoming post.

IDP Visit #1

IDP visit yesterday was good. Our IDP representative, Christine, gave us lots of ideas to help A's strength. Most of them are based around tummy time. She will be back this upcoming week to show me some techniques in infant massage. She was generally upbeat and encouraging. I also met another family this week who have a 3 year old son and a 1 year old daughter. The little girl has DS or T21. They are doing really well and are quite happy. It's helpful to meet thriving families.

Tummy Time

The kids were hanging out together today. Tomorrow we have A's first IDP session (Infant Development Program) but it seems that t may be A's best therapist. This was great. I could actually get a couple of things done while he amused her. This is a new phenomenon and a lasting one I hope.