lots to say today

Most important news first- the girls had another preemie follow up assessment at the Social Paediatric Centre (SPZ) last Friday and ..........






WE'VE BEEN DISCHARGED!! We're going back to see our beloved play therapist once or twice more, just to tie up the last loose ends but the doc says she is happy with how the girls are looking, they are not showing any major delays so get out and enjoy ourselves! We had the 3 year well child assessment on Monday and our paediatrician said exactly the same thing (he ran the SPZ for many years before moving back into general paeds so he's more like a developmental paed really) so we're going with the flow and will be therapy and appointment free for the first time ever. Well, except for the opthalmologist but that is a life long follow up so it doesn't count. Talking about eyes, we were at the orthoptician on Friday as well and I happened to mention to her that Ciara had had a corneal injury a couple of weeks ago, next thing I knew the prof was being hauled out of surgery to come check Ciara's eyes out- everything has healed well but how is that for service? It would never have happened at the Eye Guy's practice!!

Yesterday after a horrendous morning (Ciara decorated our lounge wall with pen, shredded our banking file and scratched Enya's face to ribbons), the sun finally came out so we took the girls out for a walk with their "babies" (the dolls don't have a name, they are both just called baby).


We were hoping to walk some of the beans out of Ciara and it seemed to work, we detoured past the park which for once was quiet so the girls had a ball playing on all the playground equipment the bigger kids are usually occupying.



I know this is a baby swing but it is just so nice to see Enya smiling on a swing especially when it is going high! She goes just as high on the normal swings as well now!!


Today (Sunday) we decided to go into the city as Siegen is hosting the NRW Day (celebrating 65 years of Nord Rhein Westfalen- the state we live in). We'd been warned that there were over 300 000 people expected to visit over the weekend (For comparison about 60 000 people live in Siegen!) and to use public transport, so we did. Busing in this morning was tedious with lots of waiting (thank goodness we had fortified ourselves with delicious choc chip waffles for breakfast ;0) or the meltdowns would have started even earlier) but when we eventually arrived in Siegen we lots to do and see.
On the blue light mile (emergency and military exhibitors)
Army helicopter up close and personal

Safety first



THW (Technische Hilfswerk) Bobby Car race course




After this I stopped taking pictures but there were 16 sound stages scattered around the city centre with free musical or kiddies acts on throughout the day, various free activities (eg. climbing offered by the German alpine club), loads of food and info stalls as well as all the shops being open.

There was so much to look at that the girls couldn't nap so we landed up having to leave around 4pm (we caught the train home- I can't remember the last time I was in such an overfilled train- thankfully the other passengers were all still in really good spirits and no one was drunk or it could have been quite unpleasant). Quick dinner, shower and the girls were fast asleep by just after 6pm and I'm heading for bed too now, sorry can't keep my eyes open anymore :0).

Preemie follow up

Today we had the big preemie follow up (read the Bayley's test) to check what developmental age the girls are at at age 2.

As I've mentioned before the myth that micropreemies catch up by age 2 is very rarely the case and as expected our girls are not magically caught up to their actual age of 2 and a quarter years. Ciara has amost caught up to her adjusted age of 2 years though. She only needed one point more and she would have been graded as a 24 month old-if she hadn't been so tired she would have managed that point easily as she didn't manage a couple of tasks during the assessment that I've seen her do many times at home. Enya is still a bit behind (22 months) and I think her performance was an accurate reflection of her ability (she was assessed first and was so fresh and eager). I'm not disappointed as even the doctor said her progress since she last saw her in June is amazing. There is no way she could have sat and completed the test with Enya in June. Enya wouldn't have been able to concentrate even to complete one of the tasks, never mind for the whole test in one sitting which is what she did today!

Surprisingly we have to go back again for a redo of this test in about a year, I was told they only followed up to 2 years but they apparently follow up longer in the micropreemies. Next time though I will have the girls appointments on different days so the second child isn't disadvantaged due to the long waiting time.

We also have an appointment at an orthopod now for next year to get Enya's hips looked at. She still has a funny gait ( leg movement comes from swinging her hips) and her hips are extremely hypermobile so just for safety sake we're going for a check up.

Right now I think the GI doctors are the only "common" specialist that we haven't seen in the last 2 years, and God willing we won't need to either!

Preemie followup reports again

They arrived this morning in the post and for once were better than I expected. Ciara's says she has slight speech delays for her adjusted age, while Enya's said she had slight delay with fine motor coordination but she is on track with her gross motor milestones. Considering that we are back in physio due to concerns about her walking ability (definitely a gross motor ability) I was very surprised to read this.

We are still battling through with physio at home though I had (ahem) dropped back to once a day. Today Mrs W. suggested I do the harder technique only once a day and the easier technique twice a day, since Enya doesn't cry or fight the easier technique I probably will do it. I was hoping she would say we could think about stopping again but although there has been definite improvements in Enya's foot positioning and stability when walking she still has very obvious truncal deficits. They are only really noticable when Enya runs around nekkid as she is able to compensate for them very well. I sometimes wonder if it is possible to "fix" this or if she will always have this weakness, perhaps to a lesser degree though.

After our weekly physio screamathon we went to visit Z at his work. He didn't see the girls this morning as they were up at 6 am for breakfast (due to Ciara going to bed without solids last night-she didn't like what was on offer!) and as he had a very unsettled night's sleep, I let him sleep in and did the breakfast battle alone (aside: it is so much easier than it was with feeding them at the same time, now that they both hold their bottles themselves). We had lunch in the work cafeteria, Ciara tried green beans and even chewed on some pork, Enya nearly choked on some potato and then refused everything except yoghurt. Dinner will just have to be extra healthy tnight to make up for lunch I guess. Z's colleagues were amazed at how much the girls have grown and were suitably impressed by their walking skills and Enya's still present black eye. Z enjoyed the surprise so we may have t repeat the experiment at some stage.

Kindergarten (Kita) and Fruhforderung

Well we have appointments to visit all 4 Kindergartens (yup I forgot one yesterday) over the next 3 weeks. The response was quite positive from all of them i.e. it doesn't sound like they are full yet so hopefully it will all work out. Thankfully I could arrange it so that Z will be coming with to at least of 2 of the Kitas, he always has sensible considerations and questions where I tend to get fixated on superficial things (colours on the wall and such like).

The Fruhforderung* appointment went much better than I expected, I think it helps that I went in with very low expectations! The therapist (we'll call her Mrs. R) noted after observing Enya briefly playing that she is all over the place. She can't settle down and concentrate on a game/task and this means she is not getting a chance to practice her fine control/coordination. Within 10 minutes Mrs. R said one appointment was not enough, she could give me a few things to work on at home but that is not enough. Enya needs help so that she can centre herself and concentrate on a task, right now she is unable to filter out extraneous objects and sounds and so is constantly distracted.

I have to pack away the toys so we only play with one toy at a time, for instance if we play with the building blocks, only have 10 blocks out so she is not distracted by the other 100 blocks or toys lying around. We also have an exercise I like to call "pack the parcel" : I have to pack Enya in to a cuddle with her arms and legs pressed to her body and give her a gentle squeeze and hold this for 3-5 seconds. This is supposed to help with her body awareness and to teach her how to keep still for brief periods. She gave us a couple of other games to play, the only problem is I'm supposed to play one on one. My girls get very jealous if they think I'm paying more attention to the other, if I try read a book to one, the other usually comes and grabs it out my hands or starts pulling/pushing on me to gain my attention. Now I'm supposed to try get 5 minutes alone with a child multiple times a day (she wants me to work with both Ciara and Enya), I think I'm going to have to try distraction and then hide behind the baby gates!

All in all it was a very informative and productive day, hopefully I will be able to put most of what I was shown today into practice without scaring Enya too badly (Mrs. R wants me to sing to her, now that is a frightening thought!).

*The best description for Fruhforderung is play therapy. They take mostly an advisory role showing how to encourage normal development through play.

SPZ neonatal follow up appointment

It is only in the last few weeks when we've had medical appointments that the doctors/therapists have mentioned how concerned they had been about our girls. Up to now they have avoided the issue and when pressed we got the "wait and see" response.

I hasten to add the general vibe has always been positive and at no time, not even after Enya's grade 3+ IVH (brain bleed), was there ever a mention of NOT doing everything medically possible for the girls. I say this as I've heard of cases when after the diagnosis of a major bleed, the parents have been advised to stop all treatment due to the extremely high risk of disability.

Anyway this appointment at the SPZ we again heard how lucky our girls are and how worried B had been (the doc, B, is an acquaintance from pre baby days when Z and I used to do ballroom dancing). She said Ciara shows no abnormal reflexes anymore and is on schedule for her adjusted age. Enya still shows some shoulder retraction in some of the positional reflex tests, so we have to continue Vojta probably until she is walking :0(. However on the plus side she also could see no abnormal tone in the legs so that is just a further confirmation the neurologist was full of s%$t! We are also finally at the top of the list for Fruhforderung (early intervention) which is as I understand it play therapy to encourage normal development. We were put on this list after our appointment in April. B says she actually sees no need for this but because I said I'd noticed a deficit in Enya's fine coordination we will be assessed for services when they bother to call to arrange it.

In physio Mrs W also said the asymmetry that was the big deal last time was not at all obvious so it must have just been a blip. I find it once again underlines how inaccurate an impression the doctors/therapists can get if they only have a single visit to assess a child in an unfamiliar environment. Six months ago the docs were very concerned about Ciara, where Z and I were much more relaxed (until they made me paranoid), because the child we saw at home was not the child they (and we) saw during the examinations/treatment.

Cuddles

Every morning when I go to get the Enya out of bed she leans in to me and gives me a big cuddle. During the day at odd intervals Enya will come crawling up to me, pull on my trouser legs until I lift her up and give me another cuddle. If I sit down on the floor she crawls onto my lap and pulls herself up into standing and gives me.. you got it another cuddle. I love this constant stream of affection, I used to always bug my family for hugs as a kid and it looks like Enya takes after me in this regard. Ciara on the other hand until recently expressed her affection with open mouthed kisses or by biting our noses, however in the last week she is also starting to lean in and rest her head on my shoulder for a quick cuddle. Double joy!!

Z has taught Enya a new trick: he asks "how big is Enya?", then she lifts both hands above her head and starts to laugh.It doesn't make a difference who asks the question she always responds with the same action. Too cute! We've tried it with Ciara as well, but she just doesn't get it yet.

For all that Ciara has always been the more vocal of the two, I have the feeling Enya will talk first. She is trying so hard to communicate, she will earnestly babble for minutes at a time pausing every so often to wait for a response from us. Ciara on the other hand started calling mama last week and appears to be slowly realising that when she says those syllables, she gets a quicker response.

I forgot to say we took part in another physio course this week, the good news is when I spoke to the physio she agreed that the neurologist had been talking out of her hat with regards to Enya's "tone issues". During the assessment the usual points were noted (poor abdominal muscle coordination leading to thoracolumbar lordosis and reduced pelvic stability) but a new point was asymmetry of the legs in standing and crawling. I had noticed the asymmetry myself (she stands with her left leg out to the side) but I'd thought that was just Enya's quirk, I guess not. Once again it was stated that Enya would not qualify for physio if she were not already in treatment as her gross motor skills are within 2 months of her actual age (12 and a half months to 13 and a half months). However as she has been in physio all her life pretty much, they would like to continue until the asymmetry is gone i.e. until she is walking at least. I know I've complained often enough about physio and I'm still not convinced that Bobath wouldn't offer extra stimulus but I will continue Vojta with Enya as long as necessary and by that I mean as long as I can see a need for it. A good thing during the assessment though was I saw Enya cruising on furniture for the first time ever. She has been standing for a while but doesn't walk along the furniture, she prefers to crawl the 2 steps to change position.

And lastly for today, Enya has finally got her vaccination after being cancelled twice. Unfortunately they said we've got to come back in 4-6 weeks for another set for both girls!

A year ago today.....

I was 24 weeks pregnant and lying in hospital, hoping beyond all hope that we would get at least another 4 weeks before the girls came.

We'd had a ultrasound 3 days before and everything had looked fine, although the girls were small the doctors were pleased with the placental function and confirmed we were having 2 girls. They didn't check my cervix as they didn't want to risk introducing an infection, and I wonder now if they had if maybe they could have done something. When I was admitted to hospital that Thursday night, I was 2cm dilated and they ascribed the bleeding due to the dilation.

Right now I'm gearing up for the girls birthday and it will be a happy day but I'm finding the lead up difficult. All the what ifs and what could have beens...

We got the reports from the last neurodevelopmental follow up and for once they were IMO relatively accurate. I was criticized for putting too much pressure on myself to ensure Enya drank enough, but I knew that was coming. Ciara now is described as only having mild tone and coordination problems although Enya is astonishingly still classed as at risk of cerebral palsy! I think if we had the appointment tomorrow we would get a completely different description as Enya is now doing everything Ciara was at that time and more!

I'm off to go and organise my new bookcases now and enjoy the Olympic Games so I wish you all a restful Sunday

film day

Enya and I had our moment in the spotlight today and I'm happy to report that she didn't behave herself.

During the first 3 appointments with the Speech Therapist (SLT) Enya drank wonderfully, it was only at the last 2 appointments where she showed her usual difficult behaviour. I'm sure initially the SLT thought I was exaggerating how bad it gets until he tried to feed her himself when she was being difficult. I was worried that Enya was going to be as good as gold this morning (showing me up so to say)but it was a feed straight from hell. I only managed to get 60mls of milk down her and then to round it off nicely she only ate 5 spoons of solids, whinging and protesting the whole time. This is after me saying she has no problem with solids at all. They (ESKB advisers) are now going to evaluate the tape and we then have a feedback session in 2 weeks time. I really hope they come up with some good tips as I feel the situation is deteriorating rapidly.

Ciara in the meantime is on the move, I can no longer leave her on the mat and know she'll be there when I get back. The only good thing is when she moves off the mat onto the tiles she usually starts screaming because it is too cold (my girls are like me and prefer things a bit warmer, be it food,weather or the tiles under them), thereby warning me she's on the move again.

Z has started packing for our holiday on Friday, needless to say I haven't even thought about what to pack for me and the girls. I think the first holiday with the babies is going to be a huge learning experience, I'm just grateful we've got a car with a big boot as I think we'll need it. We're even leaving the monster pram at home to save space, instead we're borrowing a single buggy and taking 2 slings for easy transporting.

NDA

We had the second neurodevlopmental assessment today and it went about as expected. Unfortunately we didn't see the doctor we know but a new doc, so we landed up repeating alot.

In general she was satisfied with what she saw but we definitely need to keep up with the physio. Ciara is very irritable i.e.she does not handle new situations well but she could see at home Ciara does more than she demonstrated in the assessment (a few times Ciara relaxed and her true level of ability shone through). Enya has her first cold but this didn't affect her showing. With Enya the doctor remarked how difficult it is for her lying on her tummy.

The end result is we need to keep going with physio at least until the girls are both crawling. She also has put our names down for a "Heilpadegogin" which falls under the broad auspices of OT but also looking at speech and social interactions. That will probably only start when the girls start walking though. The doc also offered me the chance to get my feeding technique critiqued to check that I'm not the reason that Enya sometimes still refuses to drink (no she didn't put it quite like that but in essence that was what was meant!!).

On the plus side she believes that there were no signs that the girls are stuck in any patterns of movement (that might suggest CP) and saw no reason to think that they won't eventually walk although they are a bit delayed (still have some primitive reflexes that they should have outgrown by now).

So as I said nothing unexpected came out today, but I'll be interested to get a copy of the report nonetheless.

EEG

Today was an early start as we had to be at the neurologist at 8am with Ciara for a control EEG. Enya had one while still in the Kinderklinik and Ciara was supposed to get one as well. Unfortunately despite us asking repeatedly and it being promised to us, it never got done. Thank goodness we've got such a good paediatrician who agreed the EEG was necessary and referred us to a paediatric neurologist.

The advantage of the early appointment was we were seen quickly for the actual EEG and the wait for the follow up discussion was also only an hour. I find for a doctors appointment that was quite acceptable. We were finished by 10am and home in time to help finish Enya's feed (my sister is visiting and she had the dubious pleasure of babysitting and trying to feed Enya)

I was amazed at how well behaved Ciara was during the EEG, she had to sit reletively still for 8 minutes and she managed it (this is the baby who is always wriggling about, they used to "strap" her down in the incubator). They gave us a toy that crackles when you rub it as a distraction and it kept her fascinated for the 8 minutes (we have a similar toy on the playmat at home, which I keep trying to use as distraction during the dreaded tummy time but it had never worked till today. Yup, after the success during the EEG I came directly home and tried it out-25 minutes tummy time with no temper tantrum!!)

We were told the EEG still shows immature activity but nothing to worry about in view of the extreme prematurity. There was no sign of fitting but we are to go back in 6 months for another control.

We are also going in May with Enya as her EEG in hospital showed a tendency to fitting (?) although no actual fits. We personally have seen nothing suspicious since her first week post-discharge but we are told it is better to keep a close eye on them both with regular controls until they are about 3-4 years old.

Tomorrow is another early start, both girls are having an echo to see if they still have an atrial septal defect (ASD-hole between two chambers in the heart). As I said it's all go for the next few weeks.

Guess who are 6 months old today

I can't believe it but the girls are 6 months old today!! I can remember right at the beginning just wishing that they were a week old, a month old, 6 weeks old and time seeming to drag by and now they are 6 months old!!

We had our assessment at the Social paediatric centre yesterday, the appointment should have been next month (preemie check up to see that they are on target with their development) but we had it brought forward as we wanted to see if we could get Enya speech therapy (ST). Unfortunately Enya has been struggling with her feeding from the get go (see History posts) and te last few weeks we have been battling to get her to drink 450ml in a day. She weighs a kilo more than at her discharge and that was the minimum daily amount she needed then!! We have been referred to ST and to an ENT specialist as she has a very soft voice and she often has very noisy breathing especially after eating. The down side was the doctor warned us we are probably going to keep her heart rate, breathing and sats monitor longer than we thought (we were hoping to get rid of it at the end of this month or at the latest in 3 months time) as due to her receding chin she could be obstructing her airway with her tongue when she is sleeping- the doctors explaination of why she desats down into the 50's even when she is not moving. I prefer my explaination- she remains rosy so it is obviously a false reading. I hate the monitor!!!

On the positive side they are very pleased with Enya's development although Ciara concerns them a bit. WTF!!! Ciara has had no brain issues apart from the suspected fitting and she is going for an EEG next week just to check on that- she has received no meds or had any suspicions of fitting for 4 and a half months now. In the meantime I'm to concentrate a bit more on Ciara during our 3-4x daily physio sessions (in between the hour long feeding sessions with Enya!). On the plus side Ciara impressed everybody with her social skills and her ability to vocalise i.e. scream shrilly at odd moments during the assessment. They did say she had a good range of sounds, so no ST for Ciara;-). Always a silver lining.