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.

How's she doing? 9 months old!

You would be forgiven for thinking life revolves around little t around here. However, baby A certainly directs her share of traffic. Being a baby is pretty involved and although she is far more even tempered than her older brother she certainly expresses herself and ensures her needs are met. In fact, our days are structured around her needs as much as possible with interuptions for big brother's school and swimming lessons.

So for everyone who asks, "How's she doing?", here's a summary.

Food: She's loving it. We're adding more texture now. She still favours zucchini and other squashes. She also loves swiss chard of all things. She likes carrots, turnips, lentils, green beans, peas and most other veggies. When offered apple or pear, she screws up her face and looks completely disgusted. It's quite funny. She does like sweet potato so I don't think it's an aversion to sweetness. Not sure what's up there. We are offering finger food too. She still grasps with her whole hand so it's more of an exercise than an actual nutrition input.

Sleep: This area has been quite a struggle but things are improving. I'm a believer in attachment parenting. I like to keep the babies close. A was in a co-sleeper in our room until recently but I noticed that she seemed to sleep more soundly when I wasn't there. It's almost as if she senses my presence and thinks it's party time. So with some reluctance, we moved her bed into the office. After a lousy week of adjustment, she is down to one waking per night which is much more manageable than the 3 or 4 that had been happening.

Elimination: No problems. She's very regular. We have started elimination communication (EC) which means we pay attention to when she's eliminating and we learn the signals and acknowledge it. Thanks to my sister for inspiring us on this project. When she's passing solids we bring her to the toilet right away and most of the time she finishes the job there. When she's peeing we make a sound and change her right away. Sometimes we catch the pee but that's pretty advanced and the goal is more to make her aware that we are aware and to get her used to the toilet early. We're using cloth diapers so that also helps her awareness.

Communication: Here is where she has surprised me. We've been using signs for awhile. Around two months ago, she started signing for milk! She is not consistent about it and sometimes when she does it, she really means she's tired but she is unmistakably following our lead and trying to communicate with her hands. The surprise is that she had made this connection earlier than her brother who is no slouch in the communication department. I'm trying not to get too excited because she doesn't do it all the time and she hasn't picked up any other signs but I still think it's pretty cool. She's pretty clear with vocals too when she's hungry.

Movement: This is probably where we see the most delay. She is certainly not as strong as her brother was or her cousin is but we do see good progress. She sits well. We are working on getting her to move from tummy to sitting and from tummy to hands and knees. She has started to scooch backwards on her tummy and sometimes gets some good distance if she's got a rug under her.

Overall, we aren't as concerned about each milestone as I thought we would be. We're seeing progress and a huge curiosity. She wants to grab everything (especially my glasses) and she's really interested in books. She knows who we are. I think she knows her name, her brother's name but not her parents' names yet. She hasn't had too many babysitters but when she does, she misses us.

We're all in love with this kid and super grateful that she eats well and has no health issues. We're just enjoying this age and this time and learning to trust that all will be well.

Here's A attempting to use the sippy cup. Still a work in progress but pretty cute.

Polly

Who is Polly? She is a little girl and she's sick. She has a condition that narrows the vessels in her brain which causes seizures and possibly strokes. She is the first little sparkly wonder love child I encountered while searching for information about DS. I read about her birth and her early struggles. I read about her family's journey from diagnosis to thriving sweetie in pre-school. Her pictures and her story gave me hope and reassurance about A's future. She's one of my heroes and an inspiration. Please put her high on your prayer list.

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.

Various goings on

Sometimes days and days go by and there's just no time to sit down and write. We are trying to purge our place of unused clothes, toys, papers and junk. In between we have doctor's appointments for A, kids' birthday parties and beach days. A is 13.5 pounds and 60 cm. Her pediatrician is very happy with her progress. Her eyes are ok too. They were checked last week and although she is more far-sighted than normal for this age, it's not worth correcting with glasses at this point. I suspect someday she will join most of the rest of her family in sporting some sassy eyewear but I'm glad it's not this soon.

I'm trying to fit in some reading. A friend gave me a book called 'the MemoryKeeper's Daughter'. It's a fictional story about a family who had twins in the 60's, a girl and a boy. The girl had DS and the father who was a doctor sent the girl to an institution. The nurse can't leave her there and decides to bring her up as her own. The book runs parallel narratives of what happens to both families. It's very well written and pretty emotional. I don't read much at a time but I do love this book.

Here is a picture of us at a recent patio party that got rained out. We're dressed up because the theme was come in your favourite wedding party outfit. I'm wearing the bridesmaid dress I wore for Sue's wedding (with a crazy boa just for kicks). Tor asked me what kind of animal it was. Polyester my son, polyester. A is wearing her new dress from Auntie A. Tor's outfit speaks for itself. He is all cowboy these days.

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.

It's a wrap

This is our last full day in Kamloops. Tomorrow we pack up and leave our beautiful accommodations and head to Shuswap Lake for the weekend. We'll head home either Monday or Tuesday. It's been an intense 3 weeks. I came here still on an emotional roller coaster about A's 'syndrome'. I had a hard time being around other kids and seeing happy moms with new babies. I wasn't sleeping much and although things were much improved since the breastfeeding clicked, I wasn't my best with t either.

I'm not sure why T's only out of town gigs have happened just after the births of our children. Maybe it's because I'm a bit of an escapist and when I'm home I have lots of people and tasks to distract me. This way, I had to go straight through the bad stuff and come out the other side.

I think I'm on the other side. We all love this little girl so much and we're so grateful she's ok. I don't know what the future is going to be like for her and I'm still scared but I think I've convinced myself that everything will be ok and maybe even great.

That's her above expressing her opinion on my feeding tardiness. She communicates quite well.

Today, t went to drop-in gym class again. It's been a nice place to let him run off steam and I've learned something about the brain-body connection. Here he is being persuaded to try a front roll into the foam pit.



T's work is also done as of today. We don't know what's next but it'll be nice to have him home for a little while. He's been completely busy since the birth so hopefully we can enjoy some family time before we move on to the next adventure.