A recent pic of Millie

[sherryberry79]

Hope this works, it's always hit n miss when I attempt to upload pics!

So Amelia is now 17.5 months actual, 14 months corrected.
She has just started crawling in the last fortnight when I had literally given up hope that she would! She cruising round the furniture at speed and loves nothing more than to sneak up on the dog and wollop her with the remote control! She has two bottom teeth, and she is getting two teeth at the top now.....but not the middle two, her canine teeth! She is my little vampire!
Still she has very little hair, sometimes when we are shopping I dress her head to toe in pink and people still stop me to say what a lovely little boy I have. Now I just smile and nod and reply "he's gorgeous isn't he"!!

https://i807.photobucket.com/albums/yy357/sherryberry1979/DSC_6697_2.jpg

 

[sherryberry79]

Ooooh just noticed the nappy cleavage in this photo. sorry about that, it didn't seem quite so prominant before I uploaded it!

 

[nineena]

Awww how beautiful

 

[corrie anne]

Very pretty baby. My kids are usually bold until around 2.

 

[Foogirl]

Hey SherryBerry, where you bin!!!!??

What a lovely picture (nappyage and all!) Millie looks like she is coming on a dream. How are her consultant visits going?

We have the same problem with Abby's short hair. Even dressed clearly in girl clothes, people still think she is a boy. Not that I care really, I actually enjoy seeing them squirm when I correct them as for some reason it seems like really irritating people are the ones who think that.

Nice to see you around again, I love seeing updates on our little lot!

 

[sherryberry79]

Thanks ladies!

Foogirl - I have not been on so much as things have been crazy, we went to Denmark for three wks in Nov/Dec, then we were with my sister in Berkshire for Christmas, plus we have moved house so we have been decorating too.
Talktalk can't come and connect our phone/internet until mid Feb so I am connecting to the internet with a very unreliable dongle at the moment. It's very frustrating as I get half way through a message and realise the connection has gone!
I have been doing a bit of lurking on the forum when I have the chance though!

Millie is doing well in most areas, but feeding is a real issue. We are still no further on with her being able to eat lumps, so we have not progressed beyond stage two foods (although she did pretty well with a few 'skips' today, much better than when I tried them with her a fortnight ago). Last time I saw the dietician she said that when Millie reaches 8 kilos (which she recenlt has) she will have to come off high calorie formula and go onto a regular formula. I was bloody livid as she is such a slow grower when she is on high calorie milk.....without it I can't imagine she will gain at all. It came as something of a shock too, as I had already agreed with her consultant that wjen she reached 8k she would be moved onto a different high calorie formula. I called her consultant to ask her why the plan had changed and she said that she knew nothing about what the dietician had said, but that if she went onto regular formula she would be monitored very closely and if her weight gains stopped or remain static she will go onto another high calorie milk. I only have half a box of infatrini left now, and I can't get anymore so I guess I will just have to do as thay say and hope for the best!

How is Abby getting on? Did you all have a good crimbo, we have even more toys to try to squeeze into our shoebox of a house!!

 

[KiansMummy]

so cute xx

 

[Marleysgirl]

Hiya Sherry!

Firstly - if you need Infatrini - then come and visit me one evening or at the weekend. I have boxes of the stuff!!! Andrew is getting through 3x200ml bottles a day now he's weaning, so needs about 90 bottles a month ... We are prescribed 120. I can't get the GP to prescribe less without visiting and explaining, which I can't be bothered to do; so I just get the pharmacist to skip a delivery every few months while I use up the stockpile. Seriously, if you want a crate or two (48 bottles) I can let you have some. (That probably goes against all the rules, but what the heck!)

Andrew's dietitian is happy for him to remain on Infatrini at the moment (because of the extra calories), our next visit is meant to be in February but I'm in no hurry to see her and she seems pretty hopeless at making appointments, so it won't be soon.

Andrew's also meant to be on a supplement powder (was Duocal, can't remember what this one is) but it gives him a gippy tummy so I don't bother with that.

Anyhoo.....

Isn't Millie looking fantastic? How are her legs now, I'm glad to hear that she's crawling. Have you taken her to a soft play centre? I started taking Andrew two weeks ago and he loves it, plenty of space to crawl and things to crawl/fall over.

Andrew hasn't reached 8kg yet, we had a little setback feeding wise when teething in early December segued into a bad cold over Christmas, so he was off all solids. But according to the WHO preemie chart, he's still plugging his own curve along the -3SD line, so the Paediatrician is happy and has stopped nagging us.

We haven't cracked the feeding either, still on Stage 2 foods (EK etc as they are textured rather than lumpy). He seems to have an aversion to having food in his hand to put into his mouth, I don't know if it's the smell, as he's happy enough to put plastic toys from hand into mouth. I am going to try the test products (skips, quavers, wotsits, cake, etc) on a spoon next weekend and see if that helps, but with the floor well-covered in case of the expected vomit when he gags.

Don't be a stranger to B&B - even with a dodgy dongle!!!

 

[sherryberry79]

Hi Marleysgirl

So good to read your reply, sorry Andrew was a little under the weather over crimbo, but hope you had a nice time, and I am glad he is better now.

Well yesterday we had another appointment with the dietician. I explained that we had 14 bottles of Infatrini left to use then our supply was up. I told her tht since our last appointment I had had a lot of time to digest what she had told me and that I had many reservations. I got myself into a bit of a state and ended up sobbing.......she probably thinks I am a nutter. Basically she said that because of budget constraints, when a child hits 8K, she can only perscribe high cal milk if thay are officially classed as "faltering growth."

Millie is on the 2nd Centile for her adjusted weight, and the 0.4th for her actual weight, and although this is at the very low end of normal, she does, never the less fall into the normal category. I told her that I was disgusted that Millie should have to 'falter' further with her growth to qualify for milk that in my opinion, she is a clear candidate to recieve. She said that in all honesty she felt the same way, and had the same concerns as me, but she must stick to the guide-lines,...........blahblahblah. We have an appointment for early March where she will be weiged and re-assessed.


Thankyou so much for your offer of your surplus Infatrini, it is very much appreciated, and if the offer still stands a month or two down the line I may well take you up on it. I think I will do as they have asked for the moment, at least until our next appointment in early March, if things do not go as I hope they will and she is losing weight, but still not enough to be classed as 'faltering growth' I will see if you still have any going begging!!

I haven't taken Millie to a soft play centre yet, we have been invited to Zoom in stockport and head over heels in Handforth but we have not actually made it there yet! I think Millie would really enjoy it though, especially now she is on the move!

Is Andrew using a sippy cup at all, as I am having soooooo much trouble trying to get Millie to use one and she is just not interested. She just chucks it on the floor! I took all the many and varied types of cups I have bought along with me to the dietician, in the hope she may have some suggestions to encourage her, but she just told me to leave it for now. She wants us to continue making progress with the finger foods and concentrate on that, but I feel really aware now that at nearly 15months corrected she is still on bottles! Oh I wish I clould chill out a bit!!

Hehehe....dodgy dongle........what you like

 

[Marleysgirl]

Thankyou so much for your offer of your surplus Infatrini, it is very much appreciated, and if the offer still stands a month or two down the line I may well take you up on it.

No probs. I'll try and keep an extra box in hand just in case. So they would class Andrew as "faltering weight", would they?

I haven't taken Millie to a soft play centre yet, we have been invited to Zoom in stockport and head over heels in Handforth but we have not actually made it there yet! I think Millie would really enjoy it though, especially now she is on the move!

Oooh, I shall google Zoom, as I'm trying out a few. If I decide it's worth a go (depends on where in Stockport) I may drop you a line! We did HoH in Chorlton, that was fantastic.

Is Andrew using a sippy cup at all, as I am having soooooo much trouble trying to get Millie to use one and she is just not interested. She just chucks it on the floor! I took all the many and varied types of cups I have bought along with me to the dietician,

Nah. He'll take a few mouthfuls of water or juice from a sippycup at mealtimes so long as I hold it, but isn't really interested. I've tried various different cups, sippy tops for the bottles (so that the shape didn't change), even a straw-ed cup that somebody recommended; but he doesn't want to actively suck on any of those so gets frustrated. Our dietitian told us not to fret as it was more important that Andrew got the calories, and to simply make sure we clean his teeth after the last bottle (which I generally forget to do, bad Mummy )

 

[sherryberry79]

Thanks! Hopfully we won't need it, but it's good to know we might be able to get some if all else fails.

I don't think it necassarily follows that Andrew would be classed as faltering weight. Ultimately it all comes down to cost and I think that some hospitals/depts might be more consientious in terms of cost saving than others, and it would appear to me that (unfortunately for us) this particular dietician at Stepping Hill is pretty hell bent on saving NHS money. I have experienced this before, as a woman who gave birth to her 26weeker on Dec 18th 2009 told me that her daughter was eligable for the RSV injections this winter. She is a woman I met at our baby sensory class and she is under a manchester hospital. I immediately made an appointment to see Millie's consultant, and explained that although I appreciated that the other baby was born 4.5 months after Millie, from a health point of view she was far less at risk. She had not needed any ventilation after birth, and was only on c-pap etc for short time, when in comparison Millie had been on home oxygen until June 2010, with CLD. There is nothing that could be done, she did not know why the other baby was eligable, but there was no way Millie was getting those jabs, so it really is a postcode lottery, and it makes me sick franky!

Anyway, will climb down form my soap box now! Deffo let me know if you go to zoom or HoH it would be nice to re-introduce our wee ones now they are well and truly out of their incubators!

 

[Marleysgirl]

Just one thought on the RSV injections - the 26wker born in December 2009 probably spent 8 weeks on NICU and would have been discharged at the end of the RSV-jabbing season; whereas Millie had a course of RSV jabs last winter because she was discharged earlier (I'm presuming she did?)

Andrew certainly wasn't recalled for RSV jabs this year so it's not postcode-based, must have been something else.

How often do you (does Millie ) see the dietitian at Stepping Hill? Because we only see the RMCH one every three months, she can't fit us in any more often than that. IMO 3 months is a long time in a toddler's life, things can change massively in that time.

 

[Marleysgirl]

Hang on, Sherry - if you're actually in Reddish, how about Anchors Away playcentre at Houldsworth Mill? That's where I'm taking Andrew this Saturday morning, trying it out for the first time! And you're hardly any distance away from me, coz I'm at the top end of the Reddish Road in Gorton!

 

[sherryberry79]

Yes, you're right, Millie had the course last winter, starting with her first jab prior to being discharged and having the rest at monthly intervals. The other baby probably did not recieve the RSV jabs last winter. But I was sick about it, as the other baby weighed more than Millie, and had not had such a rough ride. We have been admitted to hospital with her when she has a cold before now, as it goes on her chest. She gets taken in to have regular nebulizers, then they give her oral steroids and an inhaler. Although she is not 02 dependant anymore, she definately has a susceptibility to respiritory problems, and RSV could still be a big problem for her. Anyway, she has not caught it so far, so touch wood, she will be fine and her immune system is better at fighting off this virus now. It's just that it's so difficult to look at things objectively when it's your child, I know they have to draw a line somewhere, as the cost of these jabs is so high.

I would be interested in meeting up at Houldsworth mill if you go. I will PM you my moby number so we can arrange something.......Millie is looking forward to her first playcentre play date already

 

[Foogirl]

Abby wasn't recalled for rsv jabs this year either. I think the risk is mainly if they are under one.

Sherry, have you tried asking for another dietitian? Our first one was crap too. if you were referred by your consultant, try a referral from your GP. You might well go to a different one.

Have you tried a doidy cup, or even just a small glass. Abby took aaaaaages to get used to a cup, now she drinks from pretty much anything.

 

[sherryberry79]

Hi Foo,

It's funny you should mention the doidy cup, as yesterday we had our first appointment with the speech and language therapist who was absolutely brilliant, and gave me a doidy cup to bring home with us. Millie is 'making friends with it at the moment, and when she seems really comfortable with it I will give it a go. It's gonna be funny to tell her of how I encouraged her to 'make friends with her cup' when she is 18.....the things we do, huh?

 

[Foogirl]

Hi Foo,

It's funny you should mention the doidy cup, as yesterday we had our first appointment with the speech and language therapist who was absolutely brilliant, and gave me a doidy cup to bring home with us. Millie is 'making friends with it at the moment, and when she seems really comfortable with it I will give it a go. It's gonna be funny to tell her of how I encouraged her to 'make friends with her cup' when she is 18.....the things we do, huh?

We've been doing the same with the walking frame the physio gave Abby

 

[sherryberry79]

Awwww I hope she gets to grips with it, I didn't realise that she has been given a frame. Is it something she will use in the long-term, or just something to help her temporarily? How is your little monkey?

 

[Foogirl]

Awwww I hope she gets to grips with it, I didn't realise that she has been given a frame. Is it something she will use in the long-term, or just something to help her temporarily? How is your little monkey?

At the moment we don't know, but as time moves on, all the signs are that her pesky brain cysts might actually be causing problems. They suspect cerebral palsy, and she's having an MRI scan on Tuesday to get a clearer picture. She has to go under a GA to have it, and I'm not looking forward to that. In fact I'm not dealing with it at all well to be honest. It's just so unfair for her, after all she has come through. I found myself sobbing in the shower this morning and have a lump in my throat just typing this.

That said, I know we are really lucky and others have so much more to deal with.

She, otherwise, is doing fine she amazes us every day with her ability to try hard to get moving, and her speech and cognition are way ahead of where they should be. That she can tell us what she wants and when is a blessing as she would get way more frustrated otherwise. She is developing her own wee personality and seems to have her parents sense of fun, which should hold her in good stead.

 

[sherryberry79]

Don't be hard on yourself, I think any parent would be anxious at a time like this, and you sound like you're doing brilliantly. It seems to me that focusing on all the amazing things she is doing, and the things that she is ahead of her time for is the way forward, and you're already doing that! I think you are entitled to the odd blub in the shower now and again.
As you say, she has come through so much, and she has suprised you time and time again at what she has overcome, what a little trooper she is. I will be thinking of you all on Tuesday, sending big hugs to you and the little superstar herself