Doctor's notes about Holly

Sue went to see Holly's paediatrician earlier this month, and we received the notes from that meeting in the post today. It still floors me that the letter was sent out to 11 different people/departments - all for one little girl!

As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.

Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.

The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.

Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.

As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"

Until next time.

Holly's paediatric check up - therapy and the MMR jab

Went to the paediatrician today for Holly's 6 month check up and all seemed to be in order, which was nice.

The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.

We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.

While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".

We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.

Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro  problems that are not yet detected and allow them to manifest themselves.

Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.

Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.

We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.

More sleeps and convincing required.

Holly's neuro-review

Random shot - Holly enjoying messy play.

Sue took Holly up to Evelina today to have her quarterly neuro-review with the top people there.

She said the meeting was quite positive and Dr. Lim was happy to see the progress Holly was making.

He broached the subject of doing an MRI again to ascertain the actual extent of brain damage Holly will have. Just to be clear as well, there IS brain damage, the question at this point is how much.

The MRI done just after Holly's accident back in March was too close to the actual event to provide any lasting effects, and we always knew we'd have to do a follow up (or two) to figure out how bad (or good) things are.

Sometimes I con myself into believing there's nothing actually wrong with Holly and that Emily is the only child with "issues". Talk of MRIs to determine brain damage and the fact that Holly still can't sit up by herself at 11 months brings it all home in horrible technicolour.

I guess while others are wishing for their two front teeth for Christmas, we're wishing for a very limited amount of brain damage for Holly.

Paediatrician meeting

After what seems like a lifetime - and for Emily it was a large chunk - we finally had our Paediatrician meeting yesterday.

Sod's law dictated that, having waited 8 months, I would have to be on-site at a client meeting I couldn't get out of. The only silver lining to that cloud is Emily will have more Paediatric care once she starts at Dragonflies, so this wasn't the one-off it could potentially have been.

Anyway, on with the news.

Emily wasn't tested for Autism. Again, there's a few tests they could do, including brain scans, etc., but the treatment wouldn't change, so there's really no need to put her through that stress.

While Emily's not officially a card carrying Autism Spectrum Disorder (ASD) member, the doctor did say she was showing behaviours akin to someone with it. Sometimes you don't have to have all the facts to make an educated leap of faith. I guess it's sort of like saying, "I didn't SEE you drink 10 beers, but you are showing behaviours akin to someone who's drunk."

The doctor was concerned from the off, apparently, as Emily went up and gave her a hug - a complete stranger. At this point in her life, she should be wary of strangers, even though they're "friends you haven't met yet" (or whatever those cheesy greeting cards say).

I think the most important thing I got from Sue relaying the notes was that we do NOT overuse the word "no", else it will lose all meaning. It should be reserved for actions that would put her in harm's way. Almost like we need to say "No... priority one!", as opposed to when she's turning her milk upside down on the carpet or other mischievous activities.

This includes having her hands up to her ears. We need to let this one go, as it's most likely a defence mechanism and not her odd version of sucking a thumb. If the hands go up, she's in distress and forcing her NOT to do it only reinforces some bad behaviours.

One action point we can do is join Emily when she stares off into space, looking at the trees. We can then gently coax her into doing something else with the powers of distraction.

All in all, I get the sense that we're going to have to face facts sooner than later, but the doctor was also optimistic that Dragonflies will help her immeasurably. I don't think she'll ever be 100% non-ASD but hopefully with all this support and the strategies we're learning and implementing we can get her to a place where she can function as a non-descript drone in Sector 7G of some faceless corporation somewhere in the world... i.e. normal.

The doctor's ... again

Further to the expensive doctor visit last week in Canada, we had a minor emergency yesterday.

Emily was already looking really docile, due to the heat and jetlag. The icing on the cake was the presence of redness in her already soft nappy. Sue picked her up early and headed off to the doctor to get her checked out again.

The doctor was able to tell us that Em is hydrated properly, which usually isn't the case with diarrhoea, and that it may be a virus that should be treated with anti-biotics. This is basically what we were told for $130 in Canada, without the antibiotics bit. The redness in the nappy was food, we were told, and not blood.

We dropped off a stool sample before leaving and await the results by week's end. They've ruled out food poisoning, and Em's back at the childminder's today.

I just want the little blighter to get better as her being ill really is sad.

Emily's latest health visit

Sue took Em to the doctor's today for her latest check up. All things are normal.

However, we may not be giving her enough fat or food in her diet as she's not put on any weight as such in the past few weeks. It makes me wonder how much you're supposed to feed a baby.

When Em is breastfeeding she usually falls asleep - that's a good enough sign to me she's had enough. With normal food, if she could talk she could utter "please, can I have some more?" but as it is, she eats what we give her and then goes on to other tasks - playing, pooping, etc.

I've cottoned on, however, that when she cries now it's not neccessarily teething related. She may actually be hungry. A couple of times I automatically reached for the Calpol and teeth powders. In hindsight, I don't think that would have made her very full.

Other news from the doc is that Em is quite tall. 76cm. As 30cm is a foot, she's closer to 3 ft than she is to 2 ft, which is quite good. They say a child at 2 or 3 is half the height they'll be as an adult. Em is clearly on the way to being an amazonian 6 footer.

Other good news is her body seems to be growing into her head, which is now back on the chart (having been off it for a bit). hopefully her head continues to grow at a more chart-worthly proportion or she'll look like one of those odd shrunken heads when she's older.

In other health related news, Sue was told that Em shouldn't go to Aqua Tots tomorrow as her cough is quite bad, and the green groolies won't stop seeping from her nose.

We're still off to the NCT sale and Santa's grotto though!

Latest set of jabs today

Had an appointment this afternoon to get Emily's latest set of jabs done. This time they started her course to combat meningitis as well.

She was quite good, all things considered, and really only grizzled slightly during the jabs, even though there was a bit of blood (thankfully the cotton wool to most of it).

Last round of jabs, we gave her Calpol and she was knocked out for most of the evening. This afternoon, we've not been as lucky. Most of the Calpol ended up on a muslin or on her dress and she kept breaking into crying randomly. Sue's been able to send her off to sleep with a feed, but we're not sure for how long.

While at the clinic, we also got the little tyke weighed. She's now clocking in at over 16 lbs! That's quite the heft, but they're quite happy with her progress and so are we.

The next major hurdle is how Spain is handled...

Immunisation Jabs

Took Emily to get her immunisation jabs yesterday.

We were told she'd probably have a reaction against them as they're really just small (mostly harmless) doses of illness to which one develops immunities. Thankfully there was no side-effects... yet. Emily came through the "ordeal" like a trooper. There were tears, probably her first tears, but that was probably a mix of the jab pain and her hunger, as she was wailing like a banshee before the jabs.

We bought some Calpol at Boots just to be safe regarding any side effects, and dosed her up during feeding to be on the safe side. One of the side effects of Calpol (apparently) is your child sleeps and sleeps and sleeps. Between 3pm and midnight she was awake for a total of about 40 minutes.

Why parents don't go down the Calpol route all the time for a restful evening's peace was made clear by the warning, something about excessive use can cause liver failure.

Registered

Went to the registry office in Sutton today and got Emily all good and registered like. She's now legal as Emily Patricia Archdall John.

We got a birth certificate so she can get a passport, got a form for her to register for the doctor and signed a form that will go in the public records. Many years from now, when our ancestors are doing family tree stuff, the document I signed today will form part of their research. History in action!

Our appointment at the office was at 9.40, so for the first time since Em was born we had to set the alarm (found this funny as any sleep past 6.30am is pretty much non-existent). Anyway, last night lying there watching Magnum P.I. on DVD (oh yeah baby!) it hit me that I had only 9 hours of sleep left before I had to be up, then 8. You just lie there worrying that you can't get to sleep and the pot of sleep you can have is growing ever so smaller.

When we've been getting up whenever we wanted to, it wasn't a problem, now there was a finite time, it's terrifying.

We had another adventure in the car today, we went to Carshalton. We decided to combine the travel system with the car seat. Walked around Grove Park and the Carshalton Ponds then went for a bite to eat. Emily was absolutely amazing, the kind of baby you wish you could have on days out. Quiet, and lovely.

This afternoon, we had Sue's new health care worker come visit today. She gave us some literature, let us know when the jabs and appointments for Em will be and weighed and took her height. She's still hovering around 4.5 kg and is definitely 57in long (yes, just shy of 2 ft!!)

As I type, I'm looking after the crap-factory in the lounge, as mummy is so tired she's in her "I don't want a baby any more" phase. I was here just the other night so I understand. I'm really happy to give mummy time to rest, but am super paranoid about what to do if baby actually needs a feed. I can change her, cover her, put her dummy in her mouth but I am biologically barred from feeding her.


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Now playing: Bonnie Tylerr - Holding Out For A Hero [Special Extended Remix]
via FoxyTunes

Crisis averted

I joined Sue in her hospital visit today, not sure if she'd be joining me on my way out.

There were concerns over her bloatedness and her blood pressure, enough to get her mid-wife to refer her to the hospital for follow up exam.

I don't want to say it was anti-climactic or an emotional let down, but the tense situation I was gearing up for at the hospital never materialised.

Sue's blood pressure is within acceptable levels, the consultant also said that bloatedness and carpal tunnel issues are normal and gave some advice on how to deal with it. As a matter of course they also took some blood, and sent us off with a "see you next week".

Yep, the baby's due in less than a week. These people do this for a living, so my bets are firmly on a late delivery.

Midwife II: The Tests

Sue went for her latest midwife appoint today. This one was the local GP, not the hospital. It was slightly fortunate that she's come down with some illness (the flu or a cold), so she was able to address that with the mid-wife as well. Turns out it's a "let it run it's course" cold, but as Sue's in agony, it wasn't the prognosis she was hoping for.

In baby news, all seems to be well and the "fluids" test came back all clear, so it's onward and upward with babytimes!