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  #1  
December 29th, 2006, 06:58 PM
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Join Date: May 2004
Posts: 393
Hi everyone. I haven't posted here in quite a while and since I just replied to a post I thought I should reintroduce myself.

My name is Jenn and I am a SAHM to my DD Kendall (11), and my two DS Cade (4) and Colton (23 mos).
Cade is my child with special needs. He has PVL and a neuronal migrational defect in his brain and these things have caused his other issues which include visual impairments Nystagmus, Amblyopia and Esetropia, seizure disorder, very mild hemiplegic CP, apraxia, sensory processing disorder. He has also been dx with sleep apnea but he had his tonsils and adenoids removed and that did seem to help although he continues to have trouble sleeping soundly and is on medication to help with it. His neuro really feels like there could be some kind of syndrome there although he hasn't been dxed with anything. He does have some dysmorphic features but none that fit into any certain syndrome.

Anyway, that was just a quick intro. I look forward to getting to know everyone again!!

Jenn
Who has no fancy siggy
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  #2  
December 29th, 2006, 08:31 PM
Mom2brodyanddani
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WB Jenn!

I'm Krista, mom to Daniella(11 mos) who has PVL, CP(spastic diplegic(legs) and hypotonic(torso) and profound hearing loss, and probably an oral aversion to most textures, but not sure on that one yet.

Welcome(back) to the board!
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  #3  
December 30th, 2006, 05:18 AM
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Join Date: May 2004
Posts: 393
Hi Krista!
Thanks for the welcome. Was Daniella a preemie? I know that PVL is most common in preemies but for us we really don't know why Cade has it. He was full term with an uncomplicated pg and delivery. How is she doing? I'd love to hear more about her.

Cade is hypotonic throughout - I realized that after I typed that intro that I left a few things out that we have discovered about him. At any rate - we too dealt with the oral aversions. We have a wonderful therapist though and Cade did go to feeding clinic and do weekly feeding therapy as well. It took a while but he did make progress. He also had to be taught how to take a bite - he did know how to chew but if I gave him something too big to fit into his mouth he had no idea what to do with it. He has major motor planning difficulties which have gotten much better through therapy but we do have to work so hard to teach him everything because he doesn't seem to just pick up on anything himself. He is a challenge and a joy!

Jenn
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  #4  
December 30th, 2006, 05:54 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Hi Jenn! I am Lindsay and am a SAHM to Sydney who is 14 months (almost). She has microcephaly and brain damage caused by what we don't know. She is being treated with B12 injections for a possible genetic metabolic disorder called Methymalonic Acidemia (MMA). We are waiting for biopsy results to tell us if this is what she has or not.

Sydney also is hypotonic. Well, she is low tone in her trunk, and higher tone in the arms and legs. We are constantly stretching her. She still doesn't have complete head control yet, although it has gotten much better. She eats well, but I worry about later on for her. Learning how to bite will be a challenge. Although she bites on me just fine, LOL! There has been mention of a possible feeding tube later on, but for now she is okay. I hope we can avoid it, but if she needs it, then she needs it.

It is so nice to have you here. This board isn't active enough and with the few of us that come here we can be a really strong support for one another.

Oh, and btw, don't worry about your siggy. If you want/need help, let me know. I am by no means an expert, but may be able to help a little.

Again, back!!!
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  #5  
December 30th, 2006, 06:31 PM
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Join Date: May 2004
Posts: 393
Hi Lindsay,
Sydney is such a cutie! I don't know anything about MMA - when do you expect to get the biopsy results?

I am glad to hear that she is getting better head control and her eating well - that is a true blessing! I wondered sometimes when Cade was younger if he would have to a feeding tube. He was and still is very small but so far we have avoided it. I do have several friends whose children have tubes and like you said if you need it then you just do.

How does Sydney tolerate/handle therapy? Cade had such a hard time with it when he was younger but now he seems to do better. Sometimes I feel like I need a break from it all though. Currently we are waiting for an appointment at the UAB Sparks Clinic (we are in Alabama). It takes a good while to get in. I sent in all of our paperwork in November and as of now they think his first appointment will be in April. I don't know how he will handle the evals they do but I am hoping they can help me to know exactly what he needs therapy wise and also help with what I will request to be in his IEP for next school year.

Well, I didn't mean to ramble on. It was nice to meet you!

Jenn
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  #6  
December 30th, 2006, 07:43 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
Hi Jenn!

I am Kayleigh. I have two kids, Alex is 9 and Gracie is just about 6 months old...
Gracie was diagnosed with a chromosomal disorder when she was about 2 weeks old; we only began learning more about it however, when she was about 2 months old...........

We are still in our gathering information stage. Her disorder is very rare and has only affected 85 recorded people in medical literature.....

Welcome back to the boards!
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  #7  
January 1st, 2007, 08:03 PM
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Join Date: May 2004
Posts: 393
Hi Kayleigh, thank you for the welcome!

Has it been hard for you guys to find info about Gracie's disorder since it is so rare?

Jenn
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  #8  
January 1st, 2007, 08:38 PM
m.and.a
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Welcome (back). Hopefully, we can get this board hopping, but also hopefully, not too many mommies will need to join us.

Krista, do you have a cause for Danielle's hearing loss? We don't know the extent of Aleah's yet, but have been told it is most probably gent. She had psuedamonis from a central line she had for over 5 weeks because all her veins had blown. I told the Drs I was going to be pissed if she got an infection, and sure enough, she did, and I was. I came in a few days later and noticed that she was different. She didn't wake when I turned on her CD player, she didn't turn towards sounds. I called the intensivist in and he explained that it happens sometimes with gentamyicin.
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  #9  
January 3rd, 2007, 06:25 AM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Hi Lindsay,
Sydney is such a cutie! I don't know anything about MMA - when do you expect to get the biopsy results?

I am glad to hear that she is getting better head control and her eating well - that is a true blessing! I wondered sometimes when Cade was younger if he would have to a feeding tube. He was and still is very small but so far we have avoided it. I do have several friends whose children have tubes and like you said if you need it then you just do.

How does Sydney tolerate/handle therapy? Cade had such a hard time with it when he was younger but now he seems to do better. Sometimes I feel like I need a break from it all though. Currently we are waiting for an appointment at the UAB Sparks Clinic (we are in Alabama). It takes a good while to get in. I sent in all of our paperwork in November and as of now they think his first appointment will be in April. I don't know how he will handle the evals they do but I am hoping they can help me to know exactly what he needs therapy wise and also help with what I will request to be in his IEP for next school year.

Well, I didn't mean to ramble on. It was nice to meet you!

Jenn[/b]

Hi Jenn! We should be getting the results of the biopsy in the next few weeks, I hope!

Sydney does okay for therapy. It really wipes her out though. She can be quite fussy during it, but her therapists don't mind and she will prevail! I do know what you mean about needing a break. I often feel that way too, and just yesterday we saw a new doctor who wants her to go to ST once a week, so that is now more therapy, but she needs it, so we must do it!

It was so great to meet you to. Oh, and I used to teach and was in many an IEP meeting, they can not hold the meeting without you unless you give consent for them to do so, so don't worry about not being there. You will be, and they must listen to all of your requests and do what is best for Cade. If they don't have the staffing that he will need to get services, they need to get the staffing. Public schools are a little bit of a different dynamic than EI centers-at least from what I have noticed thus far!

Quote:
Hopefully, we can get this board hopping, but also hopefully, not too many mommies will need[/b]

I totally agree with this!!!!!
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  #10  
January 3rd, 2007, 08:56 AM
Veteran
Join Date: May 2004
Posts: 393
Quote:
Quote:
Hi Lindsay,
Sydney is such a cutie! I don't know anything about MMA - when do you expect to get the biopsy results?

I am glad to hear that she is getting better head control and her eating well - that is a true blessing! I wondered sometimes when Cade was younger if he would have to a feeding tube. He was and still is very small but so far we have avoided it. I do have several friends whose children have tubes and like you said if you need it then you just do.

How does Sydney tolerate/handle therapy? Cade had such a hard time with it when he was younger but now he seems to do better. Sometimes I feel like I need a break from it all though. Currently we are waiting for an appointment at the UAB Sparks Clinic (we are in Alabama). It takes a good while to get in. I sent in all of our paperwork in November and as of now they think his first appointment will be in April. I don't know how he will handle the evals they do but I am hoping they can help me to know exactly what he needs therapy wise and also help with what I will request to be in his IEP for next school year.

Well, I didn't mean to ramble on. It was nice to meet you!

Jenn[/b]

Hi Jenn! We should be getting the results of the biopsy in the next few weeks, I hope!

Sydney does okay for therapy. It really wipes her out though. She can be quite fussy during it, but her therapists don't mind and she will prevail! I do know what you mean about needing a break. I often feel that way too, and just yesterday we saw a new doctor who wants her to go to ST once a week, so that is now more therapy, but she needs it, so we must do it!

It was so great to meet you to. Oh, and I used to teach and was in many an IEP meeting, they can not hold the meeting without you unless you give consent for them to do so, so don't worry about not being there. You will be, and they must listen to all of your requests and do what is best for Cade. If they don't have the staffing that he will need to get services, they need to get the staffing. Public schools are a little bit of a different dynamic than EI centers-at least from what I have noticed thus far!



[/b]
Lindsay,
When Cade was Sydney's age he was VERY fussy during therapy. I never let it get to me too much though because I knew that it was helping him. Good luck with weekly ST - I hope it will make a big difference.

I totally agree with you about the schools being a different dynamic than EI. We have only been through two IEP meeting so far with Cade and have gotten what we asked for with no problem. This year he has a new ST and PT thru the school system and I love love love both of them! His OT stayed the same as last year which I was thankful for because she really is good with his sensory issues. I know this will change though when he enters Kindergarten - or at least I think it will. I know we are going to have to really fight to get him what he needs and really I don't know if public school is going to work for him at all. I am feeling fairly confident that he will do ok in Kindergarten, first and second grades but after that I am not so sure. I already have is Kindergarten and First Grade teachers picked out. I just haven't decided if I will have him start Kindergarten next school year or not. He will turn 5 on August 8th and so even before we knew he had special needs I had considered waiting until he was 6 to start kindergarten.
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