Changing Times

We've decided to put Sheena to bed earlier, as it had stretched out to 8pm, and we wanted our evenings back. I thought it would take a week or so to get her to go down by 7pm, but only 3 nights later, and she was settled by 7pm. Tonight has gone on for ever, and its only 10pm.

A Sunday Feast

Sheena has finally worked up an appetite.

Breakfast: Weetbix, prunes, apricots and milk + breastfeed

Lunch: bread (fingerfood style) apple-berrie ripple puree, pate + bottle of milk

Dinner: water-melon, bread, pear, peach, avacado, blueberries (all fingerfood style), more apple-berrie puree, custard for desert + breastfeed

She's doing so well with her finger feeding. She actually managed to reach out and grab a blueberry from me, then pop it in her mouth. Thats my girl.

Full-on Fun

I am so thrilled with the EI playgroup, it is suiting Sheena 100%. The service is so comprehensive. I can see all the attention they pay to making every experience fun, but with a strong developmental focus. It was full on fun for 2 hours, and she was so responsive to it all. A highlight was when they had a peek-a-boo singing game in a group. Sheena was very exited, so they hid her first with the scarfe (I think she just wanted the scarfe). She clapped all the way through it completely covered, with both arms going full speed underneath. When it was the next baby's turn she cried because she wanted more, but she soon calmed down when we gave her a humpty-doll to play with.

Here she is playing catch with hubby. She loves balls at the moment.

A Lovely Day

I have to say that Sheena had a lovely day yesterday. That is what they (usually) say when I call childcare to see how she is going; "She's having a lovely day"....

We braved the heat, and visited J&J so that hubby could help with some building work, and just to catch up generally. They couldn't believe how much Sheena has changed since they last saw her about a month ago.

Sheena is really starting to show-off her personality. We re-read Gross Motor Skills for Children with DS. She seems to be ready to move, if only she could get those little legs under her hips better, and build up her biceps to get some strength in her arms. She is getting there, but now that she seems willing, we're keen seize the oportunity.

Lovely in Lilac

I am going to organise some extra physiotherapy sessions for Sheena, and pay for them privately. It has been very limited through her EI service lately - especially over the Christmas break, along with us changing services. We think she is at the cusp of developing new skills, like getting into and out of sitting, pivoting, and baring weight better, but I don't think we've been shown how to develop this as well as possible. The last time Sheena had a 1-1 physio session, the therapy lasted less than 5 minutes, and the rest was talking about other stuff. It is now just a matter of fitting this in to our week, but I only think Sheena will need 3 or 4 half hour sessions before I can maintain the rage at home.

Here is Sheena ready for bed in her new PJ's from Aunty Christy.

Pigtail Princess

I got sent this video from one of my best friends. I hope you are as inspired as I was: http://www.youtube.com/watch?v=f4B-r8KJhlE

Here is the background information:

[From Sports Illustrated, By Rick Reilly]
I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.
But compared with Dick Hoyt, I suck.
Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.
Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right?
And what has Rick done for his father? Not much--except save his life.This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.
"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''
But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''
"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked out, ``Dad, I want To do that.''
Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''
That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!''
And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly Shape that he and Rick were ready to try the 1979 Boston Marathon.
``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.
Then somebody said, ``Hey, Dick, why not a triathlon?''
How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon? Still, Dick Tried.
Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?
Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.
This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man in a wheelchair at the Time.
``No question about it,'' Rick types. ``My dad is the Father of the Century.''
And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.
Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.
That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.
``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''
And the video is below.... http://www.youtube.com/watch?v=f4B-r8KJhlE

Where I'd Be Without You.

Sheena had her first day at her new Early Intervention Centre. We managed to keep Sheena awake 80% of the time, even though the playgroup runs through her usual morning nap time. She did really, really well.

Here is the basic format: Free play, then music, then snack as a group around a table, then outdoor time, then story time, and then sing good-byes, and then home. I was pretty quiet, sussing it all out today. There were 4 therapists to the 5 babies, from 1-2 years. Two of the other kids also had serious epilepsy causing developmental delay, another kid also had DS, and another kid had some other chromosomal abnormality.

I have to say, that it was soooo nice to have a group of babies where Sheena was not the most delayed. They all have their various strenghs and weaknesses, but Sheena was essentially average. One of Sheena's strengths is her cuteness, not that I am bias or anything.

As it is Valentines Day tomorrow, here is Sheena with her God Only Knows Where I'd Be Without You dolly: http://www.youtube.com/watch?v=OQHXGmfMGCc

Weigh-in

The hospital trip went well. The ENT checked Sheena's ears, and felt that the left ear is blocked, but that the right ear has certainly drained since her last check-up. One ear is OK for learning to speak etc, so there is less urgency. Sheena is going for hearing assessment in early March, then in late March we'll meet with her ENT again, and review if we need to do anything.

We weighed her while she was in hospital. Her weight on the 4th of January was 8.9kg, on the 9th Feb, she now weighs 8.86kg. Not much of a drop, but hardly the direction you'd expect in a bubba. She ate more today than she has in a week. Cereal was to madam's liking.

When Sheena started getting a little grumpy thisafternoon, we took her out in the Pope Mobile. She is a big fan of it. Here is hubby and Sheena squinting in the 5pm sunshine.

Mum keen to act.

I have just expanded my repotoire. I had been busy lately, and had not had time to surf the web, but I have just read a few fantastic blogs. I have updated my blogs of interest with a few great reads.

Today, we are going to the Hospital for a second opinion with another Ear Nose and Throat (ENT) specialist. We are keen get the fluid in Sheena's ears treated. That is on the notes from the 1st ENT Dr we saw, "Mum keen to act". We are a bit worried that he is 'old school', and was just letting it go until Sheena is 18 months. Doesn't make much sense given that hearing is so critical for learning and developing.

While we are in there, we are going to get Sheena weighed. She is back to eating nothing. She'll drink, but it is really starting to stress me out again. I think it is a natural parenting thing to stress about that, even if specialist say not to. Sheena had a dietitian appointment last Friday and she was very practical and very helpful. She suggested liverworst, pate, white sauce to expand Sheena's dietary intake. The liverworst and pate are rich in vitamins, and calories. Sheena took to them at first but yesterday and today, wanted nothing.

Also, Sheena now has a top tooth to match her bottom tooth. It cut-through a week or so ago.

Get Up - Stand Up

Sheena previously has had zero interest in standing, or baring weight, but look at her here. What a little champ.

Earlier she had (or refused) dinner in her chair, with both her feet standing in a tupperware dish full of rice. What the??? Well it was an idea so that she could get more awareness of her feet. Another thing that has been suggested, is to put shoes on her to get a tight sensation around the feet.

Otherwise she was exhausted today after two days in childcare. It really took it out of her, but she revved up in the afternoon.

Tonight we reduced her Epilim by 1ml, as she's not having any signs of seizures. She is on the minimum dosage of it now, so, like the Dr's used to say, "cross-fingers". If she remains seizure free for another 6 months they'll probably try to wean her off. The brain matures so much at this age, that a low dose of Epilim might hold off other forms of epilepsy that she is more likely than most to develop given the history of IS.

When it rain it pours

I've wanted to meet another family that have gone through the whole Infantile Spasms ordeal since Sheena was diagnosed. I have spoken to the Epilepsy Foundation, checked blogs, but to no avail. My only connection was a yahoo group with parents chatting about the different treatments and the like. However over the last 2 days I have been connected with two other families within a 30 minute drive from us that also had the diagnosis.

Here is Sheena particularly delighted in her wave jumping exploits.

Wave Jumping

We spent a couple of nights down at the beach again. We took Sheena down to the Ocean and she practiced wave jumping. We were just going to wet her feet and hands, but she got so excited, we ended up letting her get in properly.



http://www.youtube.com/watch?v=vRghmjv6tJQ

Today, she went swimming again at a pool party for my local mothers group. She seems happy enough in the water, but that fair skin makes swimming out in the sun a bit scary.

Juggling

We have had an exhausting week. Sheena and I have both had a cough, now hubby has one too. I was fine to go to work, but I had to drop Sheena off at Nan's to be babysat for 2 days rather than childcare. She is much better now.

Today we had a meeting with an OT from the EI centre that Sheena will attend this year. We had to discuss goals that we'd like for Sheena over the next six months.

1. Drink from a sippee cup 2. Eat finger food (she is still on her radical diet) 3. Weight baring 4. Crawling 5. Hand waving and clapping. 6. Understand some key words like bath and eat etc (who knows if she understands this already. 7. Improve holding skills. There are more things but I remember them all.