A Haiku for my Mom

You had five children

Now I know what a hero

You were and still are

Happy Birthday

Crackers

I've been slammed by lack of sleep for awhile. Little A's patterns are all over the place and I can't seem to find a way to surf it. Anyway, the upshot is, no time for computer or anything really. It will pass. In the meantime, here's a shot of our lunch picnic in our yard this week. Finally some sun.

What a couple of hams.

This is the first we've spent time in our postage stamp sized front yard. We had a tenant up until Jan and he was a grumpy guy. It didn't feel private enough to hang out in our own yard but now we can! It's great!

Super model

A turned 1 last Saturday. We had a crazy big bash and when I get time (ha!) I'll post some video. In the meantime, A has been scouted for her first modeling job. My friend L, is the mastermind behind Green Bean Baby. Her stuff is all organic cotton and she designs it all. Little A is her Little Bean of the month. Here is her bio in the latest newsletter.

LITTLE BEAN OF THE MONTH
A, 1 year old A is a magic little sweet pea who loves to play peek- a- boo and steal mama's glasses. She loves books both for looking at and for gnawing on. A spends time watching her big brother everyday, (taking notes for future mischief making!) She hopes to be able to keep up soon but it's a lot of work. For now she is content to mug at the camera with a sparkle in her eyes.

She's back!

Well, almost back to normal. Baby A is the tiniest bit cranky but overall it's smiles and chuckles again. I took her to the doctor yesterday and he pronounced it a nasty flu / cold combo and nothing serious. She gave him the lower lip and hauled me out of there relieved but still exhausted from my week long stint as nurse. You would think I would be used to this but t has only been sick about 3 times in 5 years.

We're lucky with him and we're really lucky this is the first big one for A. We're also grateful it's all cleared up before the upcoming birthday celebration.

Thanks for your prayers, concern and good thoughts.

Sick... and of course some other stuff

Baby A and I have been hit hard this week by the flu. The T's are ok. They're both coughing a little. I'm better now but the bug and the extra loss of sleep caused by tending to A's wakings made it a tough recovery. Baby A is still suffering. At first she was mainly coughing and wheezy but she's got a fever since yesterday and no appetite. We're monitoring it and giving her tepid bathes and ibuprofen if she's really uncomfortable. She's nursing constantly which is great for her. This is her first big illness. I'm really happy that she's 11 1/2 months old and she's never had to deal with this before. We're so, so grateful she missed all the fall bugs. Please pray that she'll recover quickly. That picture is from before she got sick. I can't wait to see that smile again.

Other things on my mind;

The Olympics

It is so exciting to have this going on in the backyard. My favourite moment was Alex Bilodeau's win. He credits his brother who has Cerebral Palsy for giving him the strength and inspiration to do what he does. He said that growing up with a disabled person gave him perspective and taught him to keep going. If his brother Fred can still walk and ski, then there are no limits for Alex. I can't find his post-run interview but I tell you I was bawling. Here he is getting his medal. Here is a story that goes into more depth on his family. The women's snowboard cross and Maelle Ricker's win was also crazy great to watch. I love snowboarding and I love that a shred betty from North Van won the gold jewellery.

Here are the fans, glued to the live stream on the computer.

Budget Cuts Coming

Our province is about to announce a huge funding shortfall for education. This will affect everyone but special needs will be hit particularly hard. Some jurisdictions are even thinking about reversing their policies of inclusive education. It gives me mixed feelings about the Olympics because although there is no direct link, it's pretty hard to imagine that we can fund a gazillion dollar event and then not fund kids like A. My next project is to get a letter written to my MLA.

Read more here.

Sarah Palin

What the heck does she have to do with me? We don't have much in common but we both have a child with Down Syndrome. She's got a platform and an audience. This group is trying to educate and influence how she represents us as a group. Go over there and sign it by leaving a comment if you feel moved to.

Thanks for listening.

Learning to Nurse, how it all went down for us

This post is for Amy, Queen of the World and her handsome young Dylan. She is trying to get her guy to latch on. It can be very difficult for any baby and for babies with Down Syndrome, low muscle tone and low energy makes it even harder. So, in the hopes it helps, here is how it all worked out for us.

Day 1 - Baby arrives 10 days early in a remarkably quick home birth. I see immediately that she has DS. She can't latch but we keep trying. Midwives call a lactation consultant and refer us to a pediatrician for testing. They advise me to express in the meantime and feed her the precious drops of colostrum with fingertips or dropper.

Day 2 - Still no latch. LC arrives and assesses the situation. She explains the benefits of breastfeeding and encourages me to stick it out as long as possible. I nursed my son for 3 years. I'm already sold. She says the stakes are even higher for kids with DS. It helps their immune system of course like any child but the action helps their jaw and mouth tone which helps future speech. Also they are often less likely to get ear infections which in the long term will also help hearing and therefore speech. I'm still sold but how do we get there?

Pump and feed until she gets strong enough to sustain a latch. Keep her close to the breast as much as possible even when not trying to nurse. Somehow try without trying too hard. Don't make it a stressful experience for either of us. Oh yeah, and get help for everything else that needs doing cuz this is going to be intense.

Pumping, Practice and Patience

Day 3 - My sister is staying with us and helping out. I am pumping every 2-3 hours and then I or DH or sister S is dropper feeding little A. She is sleepy and hungry. She can get a latch briefly on the right breast but cannot sustain it for long enough to let down the milk. Her weight is not going up.

Days 4-6 - Milk supply wavers. I'm not sleeping. I have a long strange history with insomnia. It arrives at the most unwelcome times. There are few chances to sleep and with the pressure to sleep when I can, I can't if you know what I mean. So milk is affected. I start taking milk thistle and fennel supplements. They work. I also call my friend and homeopath and she helps me through the panic.

Week 2 - My mom arrives and starts taking some night shifts. She is my hero. Baby A needs a more efficient feeding system. The dropper is taking nearly an hour. I fear the bottle. Doesn't that mean failure? LC steps in. She reassures me that the main goal is to get little A strong enough to latch. She needs food. She recommends the playtex bottle with the fat nipple. She shows us how to feed holding it horizontally so that gravity doesn't help too much. She still needs to develop her sucking power.

Days and Days go by. Somewhere in there, I have a near miss with mastitis. Pumps do not drain the breast as efficiently as a baby does so there is a tendency to get blockages. I'm advised to massage them out and use hot compresses. I start shaking uncontrollably with fever. I call the midwives and my homeopath. The midwives arrive with a prescription and a homeopathic remedy. I try the remedy first and it works in 20 minutes. Whew!

More time goes by. Friends are dropping by food so I don't have to cook. Other friends are taking big brother out for fun times while I struggle through this grueling schedule. Volunteer doulas are helping me through the 4pm - 7pm stretch where I have to feed two kids and get them to bed. DH is away. Did I mention that the only times he's ever had to travel for work are right after our babies are born? (yes, I've been asking God about that one for awhile). Anyway, we keep trying. Some days we don't even try to latch. Other days she gets on for a significant time. Every time I get discouraged, I call the LC. She says, don't worry. This could take weeks and even months. Great, I think. I can't even give up honourably yet.

Somewhere in week 5 I start using a nipple shield for the latch attempts. It sort of resembles the bottle and it holds any milk drops ready for when she is. Things start to improve rapidly.

Somewhere in week 6 I talk to my homeopath about remedies that might help for DS. She finds one and we give it to baby A.

On the Tuesday of week 6, I put her to the breast and she drains it in 15 minutes. I stare in shock and disbelief. Then I thank God. I pack her and her brother up and head out into the world to start living the busy but manageable life of a mom with two kids. By this time, I'm hardly thinking about DS at all. Who's got the time?

So what was the magic? I have no idea. Probably grace and luck. Baby A has no health issues. We were spared the NICU experience. Her heart is great and she's as calm as I am not. I know of many other people who tried for much longer and eventually gave up. They are heroes. Although it was the craziest time of my life, in retrospect, it could have been alot worse.

So Amy and anyone else trying to get their baby to nurse. Try as hard as you can and no harder. Don't feel bad if it doesn't work out. Just do your best and your little sweetie will know you did.

Thanks to my friend and homeopath, my LC, my families, my friends, the strangers who stepped in, the midwives, the doulas and THANK YOU GOD!

BTW, little A has gone on several nursing strikes starting at 7 months. She is too busy for that baby stuff. Aaaaarrrrrrrggggghhhhh. I love her so much. She makes me crazy.

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.