Baby's Big Blue Eyes

Sheena had her eyes tested yesterday. She seems to be long sighted, but it should not effect her much until she is school ages, then she will probably need glasses. She fell into a deep sleep in the car on the way to the check-up. She didn't wake up while the intern did the initial exam, which included putting drops in her eyes to make the pupils enlarge.

She eventually woke up while I was cuddling her in the waiting room, then the main doctor checked her out.

Party Time

We took Sheena to two birthday parties today. For a 3rd birthday in the morning and a 1st birthday in the afternoon. Sheena was fine for the whole day - we left at 9.30 and didn't get home until 4, so it was a big day out for her.

One of our friends who has been amazingly supportive of us through the last couple of months was so excited to see Sheena smile. Her 2 year old daughter, who is very fond of Sheena, was also happy saying, "Sheena not sick!"

Saturday's Saga

Yesterday, Sheena was absolutely fine. She gave her Nan a series of smiles during her bedtime bottle. However, she woke up about 5 times overnight, crying and very difficult to settle. Hubby was not feeling good about it at about 3am, and was thinking we should get someone to look at her, but I thought it might just be a bad night. However, in the morning she looked terrible. Crying if not on her side and being comforted, a stuffed up nose, watery, puffy eyes and a temperature of 38.2, then 38.7, then by the time we got her to the hospital she was 39.1. Her first fever :( The obvious thing to check for was a UTI, so she had a cathetar, that was clear (so far, but they still have to culture it over a couple of days). They gave her some panadol, and she fell asleep. She woke up looking very lethargic, unresponsive and just lying on her side sucking her do-do. But then, as quickly as it had come, she bounced back. She started to do little wiggles, and happy faces. Not quite happy baby dances, but near enough. When we left, her temperature was down to 37. I was happy to have that down, as she's more prone to having febrile-convulsions. Hubby had a cold earlier in the week, so the Doc thought it was probably just a viral infection.

This was all after a night out for Hubby and I. We got home at midnight, so we weren't really up for the overnight shift. At least she's doing OK for the moment.

New Bub on the Block

Sheena had her first day in Childcare (7.30am - 1pm). After orientation last week, I'd been feeling very apprehensive about it. I didn't sleep the best last night thinking about it - however it turned out fine. The room leader was there this week, and she was wanted to know all the details about Sheena - like her sleep routine, feeding habits, comfort needs, playtime, and all that baby stuff. She was really thorough so it made me feel secure that Sheena would be well cared for. She had previously worked in a special-needs kindergarden in England for a year, and has experience in caring for children with DS. That was very reassuring for us.

I'd written out all the stuff (to help me articulate it as much anything), and I stressed the need for Sheena to have lots of tummy time, and lots of stimulation. I was a bit worried that she'd be put to bed at every opportunity, but I don't think that happened.

She was a champ, and didn't need her do-do except for when she went to sleep. I was in shock when they told me that. I thought she'd be very whingy. She ate solids well, but only had half a bottle of formula, and a few sips of juice.

Down the track, I think we'll have to ensure that they maintain the rage with the Early Intervention. She is probably a bit of a novelity there at the moment, being the new bub on the block, but I don't want her to become part of the furniture (so to speak) in a few months time. We'll have to ensure that they stay motivated in bringing Sheena's development along. Besides all that, I think she'll benefit immensely from being with other kids.

Not there yet.

While Sheena was OK today, she did have a total of 3 spasms. She was still smiling, rolling etc, so she's not suffering as much, but... she is still struggling with seizure control. I'd been starting to get pretty optimistic about things, and was wondering last night if we should reduce her dose slightly, but that thought was fleeting when she had a spasm early in the morning, then two more early afternoon.

It is very difficult trying to assess what might have bought them back. It could be so many things... Some kids go on a ketogenic diet (no-carb, high-fat diet) and it helps control epilepsy. Sheena's seizures seemed to stop when she went off everything except breastmilk (thanks to her throat infection). So that fits in with the ketogenic diet basics. She had some whey-formula yesterday, so it could be that. She'd been on antibiotics, so I even wonder if that stopped the spasms. Stressful+++

Go Sheena!

Sheena rolled today - back to tummy. Go Sheena!

We went to a Peadiatric Chiropractor yesterday. Most people hate waiting at the Doctor's but by this stage, I am completely over it. I arrived on time, and seriously, there were 3 babies in the waiting room. I asked the receptionist how long it would be, and she said that he's running behind and all these babies ahead of you. I don't think I hid my frustration well. Why should a Chiropractor be able to load up patients - it is not like he had an emergency adjustment earlier in the day that put him behind.

Anyway, he suggested that her lower back was out, and she had a stiff neck. The lower back might be limiting her bowel movements, so it will be good to get that sorted out. Worse, though, he thinks we need to address alergy issues. He suggests that we cut out milk, soy, eggs and wheat from Sheena's diet. Her diet, and mine, because of the breastfeeding. This is simply not going to work. I love all food, not just meat, fruit and vegetables. Furthermore, Sheena loves breastfeeding, so she wouldn't be happy if I switched her to goats-milk formula, and said good luck to you bubba. So, we will just sit on that advice for the time-being.

Sheena and I finally made it to my local Mother's Group today. She was excellent - happily played on the floor, and had a nap on the couch for a while. Although Sheena's delays are more noticable now that the babies are 10 months old, given the huge issues that she's gone through recently, I think she is doing very well. The Neurologist had said a month ago that it would be another 6 months before she got back to how she was before her Infantile Spasms started, but I think we are already back to that point. Anything earlier than six months is a bonus.

Seven to Seven

Sheena made it through without any drama. She called out throughout the night about 5 or 6 times. Hubby and I alternated going into her room. We would just hold her hands and stroke her face and she would go back to sleep pretty quickly. What a relief. She was probably wondering all those weeks why we were picking her up out of her cot when she just wanted help turning over so she could go back to sleep.

Sheena is doing fantastic. Yesterday while she was in her corner chair, she convincingly played with toys. It seems that she needed a nudge. I'd tried to get her playing for ages, but she was too withdrawn, and the toys would just sit there within arms reach (and worst still she'd be miserable). She obviously found it fun this time, because later while I was taking her for a walk in her buggy, she reached out for her rings by herself, and played with them for an hour while we were out. This is really great for Sheena. She might finally build up some muscles in those rubber-band arms of hers. Now, when I put her anywhere she's keen to look and play with various toys. This should make Christmas Day more exciting.

Here are some pics of the bees nesting in the outside wall of our house - but no more.

Over Sheena Overnight

There is a reason why this one is yawning... Since Sheena went off solids a while ago this is what has started to happen:

Go to sleep very well at 7pm-ish
Sheena's wakes up at 2am & cries out
Dad goes and gets her
Sheena is plonked in bed with me while she frantically thrashes around until she is fed
Dad goes to the spare bed in the cold bedroom downstairs so that he can (allegedly) function at work the next day.
Sheena stays in bed with me taking up significantly more space than necessary until she then wakes up at 5am ready for overnight feed #2...

There was significant leeway when she was very sick, but now her health is improving somewhat (and she is back on solids) she is going to lose these midnight wake-up, be fed and cuddled privileges. I foresee some rather exhausting nights ahead, but better now than in a month's time.

Those wasps that were attacking us were attacked back today. They were actually bees. Pest control came out this morning. Feel a lot more relaxed at not hearing swarming everytime I walk into the lounge-room.

At request from Aunty Christy, here is a close-up of happy Sheena:

Happy Baby Dancing

We went to the local childcare centre today for orientation. I didn't really like it. Not the centre, or the people, more having it right in my face that Sheena won't be Miss Priority while she is in childcare. Hubby and I had always planned to have our kids in childcare while we continue to work, so now that Sheena's health is remarkably better, we're keen to get back on track. Easier said than done. However, like Hubby said, it is only one day a week (until early next year when it will become 3 days). I don't doubt that it will be good for her to be around other babies, but I hope that she is very well cared for in amongst the other 9 babies. She already has a old-friend in the group - Ava from my local mother's group also goes on the same day, but she is interstate at the moment, so couldn't show Sheena the ropes.

About the 5th day in a row of a happy baby!!! Sheena has recently realised that if she does a Happy Baby Dance whenever I am within sight, I will come over and talk to her. She is hilarious. I even joined YouTube today, so that I could show my sister what a changed girl we have on our hands. When Hubby came home from work, Sheena gave him dance as well. He couldn't believe his eyes.

Other than the Happy Baby Dancing the best thing about today, is that I had a 1.5 hour nap this afternoon. Sheena has been waking up at 2am consistently for way too long. It has been the least of our worries, but the interrupted sleep does catch up on you after a while.

Wolf Whistling

No spasms today. This is the first day that we haven't seen anything remotely like a spasm since Sheena was diagnosed. We are hoping for many more repeats. I had a phone-consult with her Neurologist, and he agreed that we don't have to try Topomax as well as Epilim, as the Epilim seems to be holding her seizures. He didn't think my theory that she had Hypocalcemia (severe calcium deficiency) while she was on the Pred had much substance, but I think she had it, and that was why she was grimacing all the time.

We made it to the monthly Down Syndrome Coffee Group today. The first time we've been able to go since Sheena was six months old. She was fine, and was actually quite sleepy, so basically slept or got cuddled most of the time.

The Coffee Group is very well attended. It has parents of babies up to primary school age. When I first went, when Sheena was 4 weeks old, I was amazed that there were so many young ones with Down Syndrome in just our local area (a very uneducated reaction given that 1 out of 800 births has DS, but an interesting one regardless). Thankfully it is only a 10 minute drive from my house. I was fine going when Sheena was 4 weeks, then 8 weeks, but when she was 3 months, I bawled my eyes out. The same afternoon, I stubbornly also went to my local mothers group, and cried there too.

I hate crying in public, but this past year, I have not had much choice in the matter. Something that really annoys me about crying in front of medical professionals is that they seem to want to fix the crying. They want to introduce you to a social worker, or recommend a counsellor. I think that crying is a completely appropriate and natural response to certain situations, but our culture doesn't feel comfortable with it.

Here is Sheena giving a Wolf Whistle.

Gaaaa-AAAhhhh-ahhhhHHHH-gahhh

Sheena has been in good form. I am now getting smiles without too much effort on my part. She is back talking to me today. She'd been cooing when she was 4 months, but stopped when she was about 5 1/2 mths thanks to the onset of her Infantile Spasms. She is back with a vengance, and has been saying Gaaaa-AAAhhhh-ahhhhHHHH-gahhh. When I do it back to her, she grins with her whole body - as pleased as punch with herself. I just put her to bed, and she is still chatting away.

Her lack of appetite for food and drink was starting to stress everyone out. I was the least worried about it in that she is much happier in herself - but she barely had a wet nappy last night, so hubby finally convinced me to sort it out. I popped into the maternal health nurse at the local centre. She was able to look at Sheena and could tell that she isn't dehydrated, so that is the main thing. She gave her a weight, height and head circumference check, and on the normal charts Sheena is still doing fine. 50% for weight, 10% for height and 50% for HC.

It has been 6 weeks since she has been genuinely asking for food. It had gotten much worse since her sore throat started a week ago. For the past week, she only took breast milk, so I have had to let my supply build up again. I have made a lot of progress today, and she's taking yoghurt, custard and prunes - but only small amounts at a time. It'll take a while before she gets back on track properly.

Here is a very exciting photo for us. Sheena was comfortable in her corner chair. This will give her a chance to play sitting up, while building strength in her core again.

I am delighted with her progress. Got to make the most of the good times, especially when they've been rare lately.

Still Smiling

Today, hubby and I went to a wedding. As it turns out, Sheena could have easily come, but (thinking that she would be completely wigging out) we had already booked a sitter to look after her. The ceremony was outdoors in a park, surrounded by trees, and chirping birds. The groom was no where to be seen, but as the music started, he absailed down a tree, complete in formal suit, surprising all the guests. At the end of the vows, we had to go around a camp fire that was lit by an aboriginal guy. As everyone was drowned in smoke, it symbolized refreshing our spirits. Once the fire was almost out, the bride and groom jumped over the camp fire - I think that was meant to symbolize something too, but it was very entertaining regardless. To finalize the affair, the bride and groom jumped over a dijeridoo, and everyone cheered. A very memorable and lovely wedding.

Sheena was doing well. A repeat of yesterday, and more smiling.

A Contented Friday

The biggest thing of note for Sheena today is that she has not moaned or cried all day. I could plonk her anywhere and she was contented. Here she is in her swing having a bit of party.

Sheena had a hearing test today. She can definitely hear, but if she has any impairment, they weren't really able to tell. She isn't really mature enough for the assessment, so we have to go back in a couple of months. Fancy, my 10 month old baby being immature - who would have guessed. They also tested for ear blockage, and they seem a bit blocked, but not too bad.

Small Smiles

Sheena smiled a bit after I forced one out of her with 'ba-ba-boo' talk and tickling. That was amazing. Just a small smile, but hopefully her whole-body smiles are just around the corner.

She has been put on antibiotics to help her sore throat. She has a very furry tongue, is off milk, and has a husky voice. The Doc didn't think her ears were infected. He thinks she is tugging her ears from the deferred pain. Her first ever cold at 10 months.

Here is Sheena ruling the roost with her Nan and Pop when she was only 3 months old.

Yoghurt Please

Well a big step forward today - Sheena finally started eating solids again. We were about to head out for a walk, and I finished off my morning coffee in front of Sheena in her buggy. I noticed Sheena watching the whole process with great interest. I grabbed some baby yoghurt from the fridge, and she ate the whole tub. Phew.

Not coincendentally, Sheena has reduced her Pred dosage down to only 2mls at night. The final week of weaning from it, so we are finally on the home stretch of this ordeal.

Cup Day

We have been trying to keep our chin's up lately, with not much success. It is so upsetting having Sheena regress with her development thanks to her Infantile Spasms. At the moment I feel that we miss out on all the fun stuff that most parents have (and we used to until she was six months). Simple things like picking out toys that she would like. Sheena isn't interested playing with toys at the moment, so there is no use. All she wants at the moment is to be cuddled and comforted. The Down Sydrome thing doesn't worry us much any more, its the IS that keeps on hitting us like a tonne of bricks everyday.

Part of me thinks that Sheena is starting to get better. She is starting to grimace less now that she's weaning off her Pred medication, but she is still grimacing a lot. I checked on the IS Yahoo Group, and other parents found that their baby also did hard-blinking while on the Pred, then it went away. Lets hope.

The back-arching has gone. A couple of days ago she had a positive UTI on a urine test that I do at home. I rang the Dr, and he said to go get it tested properly at a local clinic that night, or wait until the next morning to get it checked. I am getting a lot more relaxed about these things, so I left it, and checked it again myself the next day, and it was all-clear. Perhaps that might have caused the back-arching. Tonight her glucose is up again, but I'll give that another day too.

Her new thing is holding her head with her hands. It looks like it could be a headache or ear infection, but could just be her new 'thing'. It has been a couple of days, so I might follow up on it tomorrow if she is still at it. She only had 3 bottles and 2 small breast feeds today. That is hardly enough for a 10 month old baby. She would take the bottle, suck on it a couple of times, then reject it. It makes me think its her ears, because it would hurt to suck.

Hubby and I both noticed that her face swelling is starting to subside. That is something to look forward to. She is such a pretty poppet, but the moon-face has not been her best look.

It's Melbourne Cup Day today. We were busy doing home maintenance, so didn't take much notice of the races.

Mixed Messages

Sheena had a mixed day. She had a bad run of spasms around 1pm after being irritable for about an hour. They were coming every 5 minutes, so that was dreadful to watch. She was better in the evening, and seems to be less irritated in her face, and was able to focus on things for a decent period of time without grimacing. That has been one thing that she started doing since she's been on the Prednisolone medication. During her last EEG, I got them to specifically check that a grimace was not a seizure, and apparently it isn't 'epileptic activity'. I've read about another kid that also did hard-blinking in a similar way while on Pred. Only 1.5 weeks to go until she is fully weaned. I can't wait. It will be a big milestone in her treatment.

We hung out with the Street family today and went for a couple of walks - all rather quiet.

We're feeling really restricted in our activities with Sheena being sick for so long. We still manage to do a lot really, but not half as much as we'd like to be doing. Some people have said to us that it is like this with any new parents, but ours is an exaggerated situation, so it is not the same at all. Things are slowly getting better. Now that the constant moaning/crying has abated, I am feeling able to take her out to meet friends.

Here is a picture of my new kitchen especially for Rebecca C. That yellow paint is going next.

Me and my Beanbag

We had a review appointment with Sheena's Neurologist yesterday - always an anxiety-ridden experience. The only good news was that there was no evidence of Hypsarrythmia on her EEG last week. That is the irregular brain-waves that were stopping her development. A couple of spasms were noted when she was sleeping, but he doesn't think they should cause any damage. Those 20 second seizures have stopped since she's been on a slightly higher dose of Epilim, so fingers crossed that they are nipped in the bud.

He repeated his expectation that it will take her another 6 months before she gets back to the way she was. I am thinking of it as rehab. Her tone has gone backward since she's been on the Prednisolone, which we weren't aware of as a side effect. Not a good thing for a baby with Hypotonia in the first place. Otherwise, the long term outlook is far from great. Infantile Spasms should not have impacted on her motor development, but her intellect is another thing. Of course there is no crystal ball, but the combination of West Syndrome and Down Syndrome is not promising in that regard. Of course little Sheena is exceptional, so she might be the exception.

It will still be another two weeks before she is weaned from the Pred. The sooner the better, but at least it has done its job. It would have been horrendous if she'd gone through all the horrid side effects for nothing. The bloating will come down soon enough.

Sheena has taken to napping in the beanbag. I had her lying in it looking out the atrium window, listening to Mozart (if you don't mind), and she dosed off. Very cute.