Developmental disorders/learning disabilities/genetic syndromes & more support group

[nicki01]

Thank you, fingers crossed I get some answers. Each day is becoming more of a battle, if I new how to help her I would. I don't want to label her with what I think untill we know for sure!
My 14 week is still snoozing in her bed but me & Charlie have been awake since 4, it does make me laugh, I never for 1 minute thought it would be the toddler who had me up whilst the newborn slept!
Was kinda hoping she would crash again so I could get another hour but its not looking to hopefull now times getting on!
Hope everyone has a nice Sunday, my partner is off
Out so its me and the girls; we are going to Have a DVD and duvet day I think!

 

[nicki01]

Essie I love your 2 little bumble bees! So cute also am v jealous of Thomas's fancy dress, he looks adorable!

 

[sequeena]

Lmao essie!! Let's hope your hubby doesn't look at your searches he'll think he's in for some fun in the bedroom they sound great though I'll definitely look into it for Thomas x
Oh no nick did you get anymore sleep?

 

[essie0828]

Good thing the baby is a good sleeper nick I hope you have a lovely day cuddled up with your girls

Hayley has slept 4 full nights in her crib, in a row! That's a record for us. I have to admit though, I've slept terribly without her. She's still in our room and I hear every movement she makes when she is settling herself back to sleep. Almost like being hyper aware. I still cuddle her to sleep then put her in her crib. She won't fall asleep without me but we're making progress.

 

[essie0828]

Hayleys ST also recommended us to give her a vibrating toothbrush to play with. She drools quite a bit and the toothbrush helps them to learn to swallow more often. It has helped some but if her nose is stuffy all progress is lost.

 

[nicki01]

No I didn't get any more sleep, the worst part is tori still feeds 2 hourly but this morning was the first ever morning she has gone longer so had Charlie not woken I could have had longer than an hour solid for the first time in ages!! Lol.
Had a nice duvet day with the girls tho! I've shown Charlie how to make a den using sheets and blankets so she has had me doing that all day, nice to have an easy going positive day with her today!

 

[essie0828]

Aww blanket dens are the best

 

[nicki01]

Hope everyone is ok!
We had a bad day today, was supposed to be going to sing & grow this morning but Charlie was up grizzling and crying all night, couldn't figure out why! Getting up this morning realised she had at some point after I put her to bed has a none smelling poop and as it had been in her nappy all night has given her really nasty nappy rash! I feel awfull, I had to put her in a cool bath as I couldn't wipe her she just squeeled in pain! Had her nappy free for most part of the day and sent her to bed tonight covered in nappy cream! Also treated us to fish and chips at lunch time but whilst bringing both girls in from the car I put them on the stairs and the dog ran of and ate them!!!
Hoping Charlie's butt is better tomorrow as the poor little mite could hardly move today! Will be checking her nappy when I'm up feeding tori tonight to check she hasn't pooped again!!

 

[essie0828]

Aww nikki that does sound like a rough day.

 

[Peanut78]

Hi all,

I've been travelling and not had time to catch up on posts!

I wanted to post this link (which I've already shared with Sarah)

https://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

A friend shared it with me who also has a child with special needs. Look beyond the very specific intro to her son/ issues and what it means to be a parent to a child with special needs - it really, really struck a cord with me - made me cry, but also feel better in that I am not alone.

Will catch up with posts soon!

 

[sequeena]

That really got to me, thanks P. I am so angry and bitter at times

 

[essie0828]

Same here It's hard not to be angry and bitter.

 

[Feathers]

Hi ladies apologies for a longer absence. Sequeena I'm pleased to see Thomas doing so well after his operation! I have been trying to follow on FB when I've had internet access and fingers crossed his hand heals up well! I also read that article earlier and it's so true isn't it. I think feeling angry and bitter is just one of those things that goes along with children who maybe aren't quite the imagined norm! At least that's what I tell myself. That I am lucky compared to some people and it's okay to be bitter about things sometimes.

Portage has been going really well for her, we have a large list of targets but they are so relevant to her I can't help but feel hopeful that if she can achieve these things she will at least be a little closer to being caught up! Unfortunately we've had a few weeks of illness again. A UTI followed by another hospital stay whilst they tried to work out what was wrong (tonsillitis this time it turns out) which came on top of being in myself for possible early labour (it never rains it pours doesn't it!). It meant we missed halloween so little Miss had to dress up later when she was recovered and back at home, but she still had a good time. We seem to be hitting the point where she's getting frustrated now at not being able to communicate as well as most of her peers and it's resulting in more tantrums and some violent behavior (hitting, pinching, scratching, biting) which is difficult to deal with although fortunately it's mostly been aimed at me and her Dad so far.

On the up side we have her MRI scan in 2 weeks! I'm a little nervous about the sedation for her, but I know it will probably be harder for me than for her and it's for the best as there is no way she can lie still for that!

I have to admit I'm at the point of pregnancy now where I'm starting to worry a little about baby #2. I mean my DD is perfect and I love her so very much, but there is no denying she was difficult from birth with feeding and breathing difficulties etc and I'm so hoping that this time is easier. Her being in hospital again really made me worry about how I will cope when her brother is here too. I guess all we can do is take it one step at a time. Anyway sorry for the rambling update! Hope all is well with everyone here!

 

[nicki01]

That post is so true, whilst me and Charlie don't face some of the challenges other mums and children do, we have our own challenges daily and I can still relate!
I am blessed with a truely amazing little person but I do feel jealous and bitter alot of the time! Only last night I got into bed and cried for the first time since I've begun this journey, just a fear of the unknown at the moment, I have no answers, I don't know what the future will hold for Charlie, and what battles she will face daily and I guess its knowing what a cruel world we live in! I'm yet to see a different side as I've not long started along this road!

 

[nicki01]

Bit quiet in here! :wave:

Well my little Charlie bear is in nursery this afternoon so I went to see a bf counsellor about my worries with tori!
Wasn't expecting to come out with a list
She needs to see a chiropractor as she was a shoulder dystocia birth and apparently that could be the reason for her screams on feeding, also is 25% tongue tied, and has suspected cmpa/soya sensitivity, so ive to cut all that out of my diet that's going to be a whole load of funh!!

Oh and I have a slow let down and low supply!

Lots of work to be started and more appointments to made over here!!

Hope everyone is well, and just busy having fun with there little monsters!

 

[sequeena]

Oh man that is a lot, hopefully it will help though!

Finally got T's paediatrician appointment, it's on November 20th his first group speech therapy was yesterday. I was disappointed. It only lasted half an hour and the place has no pram access. The location is quite a distance away so I have to use the pram. I don't know, I just don't have a good feeling about this.

 

[nicki01]

Good news about the appointment! How silly about the speech therapy tho! You would think they would have access for wheelchairs etc! What did you do with the pushchair today?

 

[sequeena]

Oh nothing his appointment is once a week. I had to bump it up and down the steps, there's not a lot thankfully.

 

[essie0828]

nikki. Hope breast feeding improves for you hun. Hope Charlie is well.

Sequeena the therapy sounds a bit short to me. Half hour with a group? It doesn't sound ideal but it is at least some time with other little ones and a therapist. Do you get to stay with him and the other moms during the session? I hope as the therapy gets along it helps and is worth the hassle.

 

[essie0828]

Feathers you poor dear Hope your lo is feeling better and hope bean decides to stay put for a little while longer.