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

[essie0828]

Thanks

How is Hayley doing after her op?

She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited Hopefully once she heals fully her speech will take off.

How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?

 

[sequeena]

Thanks

How is Hayley doing after her op?

She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited Hopefully once she heals fully her speech will take off.

How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?

Oh wow, that's really great and encouraging! He won't see the ENT doctor again until November but yes I think he still has glue ear. Did Hayley's affect the wax in her ear? As Thomas has loads, it over spills onto his face

 

[essie0828]

Essie. I hope everything went well

we have very clumsy steps! he's determined to go, but just lacks the balance. he can manage close to 10 steps, but usually falls after 4... he's so Fricken cute when he's doing it. so proud of himself

Bumpin she did great. Lots of gunk came out of her ears and she really seems to enjoy hearing her voice now lots of babbling and trying to talk. Except for in speech therapy today, she was quiet as a mouse. Figures!

Go Gabe Go! Oh yeah! Move those feet little buddy. Hehe. Pregnant mama and a mobile little man Good luck! That's such good news bumpin. He really may just be taking his time developmentally

 

[essie0828]

Thanks

How is Hayley doing after her op?

She's doing really good! Last night after we took the cotton out of her ears she was babbling up a storm. Lots of new sounds coming from her and that really gets me excited Hopefully once she heals fully her speech will take off.

How are Ts' ears doing? Do you think that could be part of his regression? It's probably not the whole answer but it may help him some to be evaluated for his hearing again?

Oh wow, that's really great and encouraging! He won't see the ENT doctor again until November but yes I think he still has glue ear. Did Hayley's affect the wax in her ear? As Thomas has loads, it over spills onto his face

No she never really had any drainage from her ears. Waxy or runny. And when she did have wax it was usually clumpy and kind of fell out. If he is having enough drainage to leak onto his face it kind of sounds like his ear drum has a hole in it already.
All of Hayleys' docs would ask about how much drainage she was having from her ears and would tell me that sometimes that's how ear infections would resolve themselves. The pressure and bacteria activity eventually puncture the ear drum to drain the ears naturally. Problem is the drain doesn't stay open and the process repeats itself.

 

[essie0828]

Her ear drums were always bulging out from the pressure but no fluid would drain. Hence the tubes. Now all kinds of gunk is coming out.

 

[essie0828]

Now if we can just keep them dry and keep from introducing new bacteria into the tubes I think we will be good to go.

 

[essie0828]

Sorry been quiet. Im suffering with PGP pain so badly now. My work has been asked to make reasonable adjustments but it looks likely I'll just be off work entirely soon which has been hard on DD who just wants Mummy to play on the floor with her like usual and doesnt understand why a leg kicking competition laying on my back isn't filling me with joy as it is for her

She's growing so fast and her understanding is really coming on. She said her first 4 word sentence a couple of days ago! (Say byebye to Jojo) In the correct context etc. And now she's learnt the sign for food she's signing for it all the time. Youd think she was starving lol!

Hope the morning sickness isn't going too badly bumpin2012! It's hard with a little one isn't it!

You poor dear Work, raising a bun and baking one! Whew! I get sore just reading about it. I hope your work arranges something for you, or heck, if you can afford it I hope they put you off. Go home and rest!

For new words, yeah! Lol, it's funny she likes the sign for food. My DD said cookie all the time after she learned it. But then again who wouldn't if you got a yummy cookie every time. She went through a whole box of teddy grahams in no time!

 

[sequeena]

Ears are confusing

 

[essie0828]

Ears are confusing

yes they are! I had no clue a childs ear could do that. Or an adults for that matter. And I have had a couple semesters of Anatomy and Physiology

 

[essie0828]

Ears are confusing

yes they are! I had no clue a childs ear could do that. Or an adults for that matter. And I have had a couple semesters of Anatomy and Physiology

 

[essie0828]

Ok this is a little off topic but....

DDs new Speech Therapist is female and taller than me. She's about 6'2" in tennis shoes! And she's gorgeous. I seriously thought I was going to have to shut DHs' mouth myself Asshole! But I understand. Lol, the reason I knew a little about ear infections and surgery and blah blah....was because the tech explaining all of it was a super handsome man. Like movie star handsome and I may have asked a few extra questions just to keep him talking longer. Don't get me wrong we don't cheat, but come on, who don't window shop?

 

[essie0828]

So DD's therapy schedule is starting to explode. We now have therapies scheduled for Monday (speech), Tuesday (physical), Wednesday is free for now, Thursday (speech), Friday (occupational).
Whew! And we still have another PT slot to schedule She's a busy, almost 19 month old, little girl.

 

[SammieGrace]

My little boy, age 2 now, did about 8 months of PT and now that he is walking well he is on to speech. Cullen can say "hi" "dada" and "uh oh". We took him off of gluten about three weeks ago and he has recently started saying "shoe" and "cookie"! I am so proud of him starting to talk more and he seems to be doing better off of gluten. He is in speech one day per week and in a fulltime daycare class with about 4 other kids ages 16 months to 2 and a half. The speech therapist says he has verbal apraxia, or trouble making the mouth movements needed for speech.

We have an appointment with a pediatric neurologist in October, which I am hoping will provide some answers about what is going on with him.

We are also thinking of taking him to the Autism and Communication Disorders Clinic at Georgetown for an updated assessment.

 

[Tiff]

Essie, I very much wish that any of Claire's therapists were hotties! Would make it that much more interesting ha ha.

Sammie - Well done on your little man's progress! We've looked into the gluten free diet, but luckily Claire is a good eater and we were told not to mess with that.

We've done our home study for ABA therapy and we're now waiting for them to actually start with her. This will be the first form of therapy that Claire will have since getting her diagnosis last October. Looking forward to it!

 

[sequeena]

Hey girls sorry I've been MIA, how are we all?

I took Thomas to Thomas Land on Saturday, he loved it it took him a while to warm up as he was so overwhelmed but I managed to get him on a few rides and we had a lot of fun. I can't wait to take him back sometime next year!

Yesterday I had my health visitor and a social worker from the child disability team at the house. Things are really moving now and I'm feeling a bit overwhelmed myself.

They're applying for all sorts of grants - for driving lessons, sensory equipment, a carrier (ergo/mei tai etc), a nursery placement and more. My head is spinning. I am grateful for all the support and so glad T is having this opportunity but it just hammers home how much support he does need and that is hard to deal with

The social worker will be back to tell me the results of the assessment then portage will be out in a few weeks to start working with Thomas. We're still in the process of getting him DLA. We've gathered together the reports from his doctors and my HV has written a letter of support. The social worker is also going to write one. I pray we get it. It would enhance Thomas' life so much.

I am just very emotional at the moment everything seems so much more real now and it's so hard to swallow.

 

[sun]

Hugs sequeena

I remember that feeling from one of our earlier appointments where they gave us the list of appointments and therapies. Then we went to a support group (also recommended) and I realized that this thing I had feared most really was our reality. But that was at first. The great thing though is that the therapies and groups are SO helpful and seeing him progress and learn and socialize just makes me so proud.

B has now been in regular kindergarten for 3 weeks and it's going ok. I still worry so much though, because the other kids are older (4-4.5) and they are social in a way that he doesn't understand. They're loud, and they can taunt each other or do things he doesn't get (nothing bad - just things 4yo kids do). So he doesn't get it and is a bit scared of them so watches from afar. The teacher has sent notes saying he's shy and why doesn't he talk, but I'm hoping she'll figure out that he actually is probably baffled by these kids. Because he's not shy when he can find another person that speaks his language! And speaking of language, he has yet to say anything at school - but I'm hoping with time he'll start chatting away as he gets more comfortable.

 

[bumpin2012]

sequeena, that sounds so overwhelming! glad hee had a good time at Thomas land

sun: hopefully he settles in. is his teacher aware of his delays?

afm: had a very rough weekend. was feeling super ill up until Friday, and Saturday felt a bit of, and by Sunday I felt 100% not pregnant. called my OB in a bit of a panic, as I've never felt good while pregnant. was is for a scan today, and bug is measuring exactly 7 weeks, with a healthy little heartbeat flickering away. I'm baffled because I just feel normal, after 2 weeks of non stop nausea. but everything looks good

G has been refusing to try walking again. seems to offer the safety and speed of crawling. won't even walk holding our hands at this point. but I'm sure he'll get it eventually

 

[sequeena]

Thank you, I feel better now. I went through the whole 'why us, why him' thing last night. It's good to let these emotions out though. I try to avoid speaking about it with OH as I think he has trouble with it too. All he ever says is he's fine, he'll get help.

Oh well done B. He'll get there, it can be very daunting but I bet he'll come on leaps and bounds

Glad you're ok bumpin! Don't worry G will be off again soon!

 

[AP]

Ok this is a little off topic but....

DDs new Speech Therapist is female and taller than me. She's about 6'2" in tennis shoes! And she's gorgeous. I seriously thought I was going to have to shut DHs' mouth myself Asshole! But I understand. Lol, the reason I knew a little about ear infections and surgery and blah blah....was because the tech explaining all of it was a super handsome man. Like movie star handsome and I may have asked a few extra questions just to keep him talking longer. Don't get me wrong we don't cheat, but come on, who don't window shop?

Haha similar happened here, yet he won't admit it. There was this home teaching assistant that I had never met and DH started going on about how much she was like me, blah blah blah, and actually sounded like they had had a good chit chat, to the point he knew where her OH worked, I was like er, wtf?!?!?! Shes not on the scene thankfully!



Today we had Alexs ASD development worker up and she told us the results of alexs psychoeducational assessment, it came out at 2 years old rather than the 4 years old she is. Sigh. I hate hearing all that. I knew that though, shes on par with her sister.

Tori had a good day though, we had her speech class today and she was a joy. Later the ASD development worker had said she had never seen such a relaxed and compliant 2 year old.

I dunno what they are meant to be like lol

They've gave us a list of suggested activities that her nursery have also been given. All very simple things for us to try.

 

[Tiff]

Squeena. We were SO lucky that the early intervention services resource teacher did most of that stuff for us. She filled out all our info, applied for all the grants and just had us sign each of them and gave a brief explanation of what we were signing. Less stressful that way, and I would have felt like I was drowning if I had to do that on my own!

We were overwhelmed too with how much support Claire needs. Because she's our only, I forget that other parents don't have to deal with this sort of thing.

Sun - I had those same fears! Does B have an EA? I can't remember though I'm sure you've mentioned it before. Claire's EA really helps her to be interactive with her classmates, which I'm grateful for.

Bumpin - I'm glad everything is okay with your bean!!!

Sandi - Ahh, those reports are definitely a kick in the gut. Even though you already knew it (I was the same with Claire) having someone else actually TELL us as much really freaking hurts!


As for us, we had Claire's meet the teacher social last night at her school. We've already met the teacher a bunch of times with all the meetings and whatnot we had to have to prep Claire for school entry, but it was nice to look around her classroom. Some of the other kids even said hi to her while we were waiting for the teacher to unlock the door which warmed my heart. Claire loves other kiddos but has a difficult time interactively playing with them.