Post your childs diagnosis!! - Page 35

[mandcc96]

Originally Posted by WindmillSong

My youngest son, Gabriel has Dystonic Quadriplegic Cerebral Palsy. He is exclusively G-tube fed, except for little "tastes" of food here and there, is on 4 different meds three times daily, and needs nebulizer treatments on a daily basis. He can not sit up/crawl/walk etc, and has very little neck control. We use a Kid Kart for mobility. We have been kept busy with in home therapy up until this month, when Gabe turned three. He just started an introduction to Pre-school (right before they are done for the year, lol) and will receive PT/OT/Speech there.

We also have a seven year old, and five year old. Both have been through the birth to three program for speech. Our oldest is now struggling with reading/spelling, and the teacher has already implied taking him to the doctor for "meds" as his focus/attention is sometimes lacking.

I'm also expecting-our last child, as I think we will definitely have our hands full by then. I am due in August, and have had a pretty anxiety filled pregnancy so far, due to the traumatic delivery of Gabriel. My OB says I am going through PTSD...everything is going okay so far, it's just my own worries/anxiety that is an issue now. The chance of another abruption happening is 30% apparently, so my doctor is being really wonderful and trying to help keep me calm. She is having me come in every two weeks already, as she said my anxiety is only going to get worse as time goes on.

Congratulations on your pregnancy. It's hard to enjoy the miracle of a new life when there is so much stress from it. I had a lot of anxiety with my last (preterm labor at 19 weeks) and lots of bedrest with a difficult birth so I feel for you. It's very difficult to deal with a stressful pregnancy with children who don't have tons of medical issues never mind ones that do. Lots of warm wishes to your family.

[WindmillSong]

Originally Posted by mandcc96

Congratulations on your pregnancy. It's hard to enjoy the miracle of a new life when there is so much stress from it. I had a lot of anxiety with my last (preterm labor at 19 weeks) and lots of bedrest with a difficult birth so I feel for you. It's very difficult to deal with a stressful pregnancy with children who don't have tons of medical issues never mind ones that do. Lots of warm wishes to your family.

Thank you,

[BookGoddess]

A warm welcome to all the new parents.

WindmillSong - You have your hands full mama. Congratulations on the new baby!
When my I was pregnant with DD we discovered through a routine ultrasound that she had a problem with her umbilical cord and that she was at a higher risk for stillbirth compared to kids without such an umbilical cord. The problem wasn't genetic. It was just one of those flukes that happen for whatever reason. The whole rest of the pregnancy after that 20 week ultrasound was very very stressful. I don't really have any words of wisdom but I can commiserate with some of what you're feeling. I'm glad you stumbled upon this board on MDC. It's a positive and supportive place for many of us. See you around.

[WindmillSong]

Originally Posted by BookGoddess

A warm welcome to all the new parents.

WindmillSong - You have your hands full mama. Congratulations on the new baby!
When my I was pregnant with DD we discovered through a routine ultrasound that she had a problem with her umbilical cord and that she was at a higher risk for stillbirth compared to kids without such an umbilical cord. The problem wasn't genetic. It was just one of those flukes that happen for whatever reason. The whole rest of the pregnancy after that 20 week ultrasound was very very stressful. I don't really have any words of wisdom but I can commiserate with some of what you're feeling. I'm glad you stumbled upon this board on MDC. It's a positive and supportive place for many of us. See you around.

BookGoddess, thank you. I bet that made for a long, long second half of pregnancy. With this pregnancy, I haven't gotten too excited, and I've been pretty reserved as far as telling people-almost like I'm expecting that something *will* happen. I am now at 25 weeks, and I remember being so nervous, and just waiting for the "viable" time of 24 weeks, to come. Now, it's each week that passes, and the baby is growing, that I feel better with. Of course, if an abruption starts happening, now I will worry if I can get to the hospital in time, as far as someone watching the boys, and that the baby will make it out in time. I've also been reading other issues, kind of like with your baby and the cord problem...that makes me worry too. I never would have thought of things like that before.

[afullmargin]

Oy, had to step away for a few months due to just the daily stress of keeping up with the boys, a failing relationship and work! But, in the intrim we've managed to get Tay's current diagnosis as well as a (VERY unexpected) diagnosis for the little one.

Taylor was, as suspected he would be, diagnosed with moderate functioning autism. We moved on pretty quick, finally got him in preschool after a wonderful wait for the school district to catch up to him. He's doing co therapy ST/OT every other week - I wish we could do more but right now we're limited to what the insurance will cover. Currently working as best we can with the county board of MRDD to cover the best summer program we can because the school has completely shot down ever attempt to even consider ESY services because he started school so late in the year and there is no evidence to support the potential regression or that he will not be able to achieve his IEP goals without the summer program. You know, because it's his fault the first evaluation was in November and it took until the end of January to have an IEP meeting and until the first week of March for them to let him start. Bah.

Of course, in that time my youngest son was diagnosed as failure to thrive because he has the exact same growth pattern his brother did - 1st percentile represent. Apparently being on a steady growth pattern with no loss of weight - just slow physical growth constitutes as FTT when it did not 3 years ago. But, the good news is we were able to do what we didn't have the foresight to do with Tay and got him into EI. So far he is progressing right along the average to advanced mark in everything but growth - and I'm totally happy with that.

So.. uh, yea. Fun times!

[BookGoddess]

Welcome to the SN board, mama.
It's awesome your youngest son is making such good progress. That's so wonderful that he's advanced in some areas.
Could you take an advocate with you to your IEP meeting to help you get more services for Taylor? Local disability groups and your local ARC organization should have advocates who can help you and/or come with you to an IEP meeting. I'm of course assuming you haven't done this already.
It's very frustrating isn't it to get services that we need for our children. I wish getting the therapies we need for our children wasn't such an uphill battle.

[QueenOfTheMeadow]

Welcome to the Special Needs Parenting Forum!! It's nice to see new faces...errr...names. There are some absolutely wonderful parents here. So don't be afraid to ask for advice, share your stories, truimphs and frustrations.

[meganmommyof5]

New member :)

Hello everyone. My husband and I have five children, and our second youngest DD (who will be 3 in June) is special needs. She has Septo-Optic Dysplasia, Hypothalamic dysfunction, Epilepsy, paroxysmal sympathetic storms and global developmental delays. She is legally blind, doesn' walk or talk (yet), and is the happiest girl I know. Everyone who knows her, loves her.

[aja-belly]

welcome megan!

[mamafish9]

Originally Posted by meganmommyof5

Hello everyone. My husband and I have five children, and our second youngest DD (who will be 3 in June) is special needs. She has Septo-Optic Dysplasia, Hypothalamic dysfunction, Epilepsy, paroxysmal sympathetic storms and global developmental delays. She is legally blind, doesn' walk or talk (yet), and is the happiest girl I know. Everyone who knows her, loves her.

I don't even know what most of those things are, but I love the happy part . Welcome!

[BookGoddess]

Welcome to the SN Board, meganmommyof5.
Feel free to open a new thread if you have a question or you need to share something with the other parents on the board.

[afullmargin]

Originally Posted by BookGoddess

Welcome to the SN board, mama.
It's awesome your youngest son is making such good progress. That's so wonderful that he's advanced in some areas.
Could you take an advocate with you to your IEP meeting to help you get more services for Taylor? Local disability groups and your local ARC organization should have advocates who can help you and/or come with you to an IEP meeting. I'm of course assuming you haven't done this already.
It's very frustrating isn't it to get services that we need for our children. I wish getting the therapies we need for our children wasn't such an uphill battle.

It hasn't been easy, that's for sure! Mostly finding local resources has been rough - I contacted our local ARC chapter and was told that they are not currently working with anyone right now as they have no funding for the year. Thankfully the Autism Society was able to point me to a general IEP advocate that pretty much told me that for this school year I'm essentially out of luck - but when we have a date set for next year to give them another call.

[BookGoddess]

I'm sorry to hear that no one was available to help you this year.
In our area, parents who have gone through the IEP experience with their slightly older children will come to IEP meetings with new(er) parents. Is that a possibility?

[afullmargin]

Originally Posted by BookGoddess

I'm sorry to hear that no one was available to help you this year.
In our area, parents who have gone through the IEP experience with their slightly older children will come to IEP meetings with new(er) parents. Is that a possibility?

I'm hoping so! Working on it right now even though I've got a bit of a wait for his revision.

[AJ.]

Hey everyone! I'm so glad to be here!

My daughter Jax is 9 months old. She was born with her liver protruding from a chest wall defect on the right side of her body, a diaphragmatic hernia, as well as (what would later be diagnosed as) chronic lung disease, and phocomelia (a malformation of the limbs - though in Jax's case, it's just her arms). Her arms are shortened and she has no prehensile grip. She cannot crawl, and we're just beginning to practice assisted standing and assisted walking. She goes to "school" twice a month for a group setting of combine OT/PT/ST, and receives numerous in home OT/PT/ST visits as well. When the doctors performed surgery to place Jax's liver back inside her body, they also gave her a g-tube. We've since graduated to a Mickey button. On one side, her diaphragm is dome shaped and is ballooned into her rib cage area. Jax had a nissen fundoplication surgery in February after a long, 6 month struggle with GER. She gets oxygen at night, and her saturation levels are monitored regularly. Jax also has cystic encephalomalacia. Essentially it's a cavity in her brain that shouldn't be there. So far it has yet to mean anything for Jax and her cognitive development.

*whew* Okay...that's it in a nutshell, not to mention I even left a few things out.

[BookGoddess]

Welcome to the SN board. I'm glad you're here but also not so glad you have to be here. Hope that made sense.
You and your DD are dealing with a lot of health issues. How are you both doing?

[VocalMinority]

I have identical twin sons about to turn 14 who both have a Non-Verbal Learning Disability, which is on the high-functioning end of the Autism spectrum.

"High-functioning" in our case refers to their level of awareness of other people and their surroundings, and their ability to communicate, rather than above-average intelligence.

[corps9499]

Caterina has sensory processing disorder and possibly some vision issues. She used to have food allergies, but grew out of them around age 3. Still have environmental allergies, but pretty mild these days.

[Babyzen]

5 Years strong!!

This thread has been going for 5 years, almost to the day! Thats incredible!! Anyhoo- My son 'B' has trisomy 21/DS. He will be 4 in a couple months. He has been walking for a about a year. He still isn't talking. He fecal smears so has to wear special clothing (under his other clothes when we are out). He has a severe aversion to water. Screams and panic like he is drowning, even if there is only an inch of water in the tub. Its traumatic so only bathes about once a week, unless we have poop painting to clean up. My son "M" has fetal drug effect hyperactivity (dr.s say too young to diagnose ADHD) and asthma. I don't know about other parents but the poop thing really gets to me. I don't know why, its part of our routine but I get so stressed when I wake up in the morning and wonder if its gonna be one of those days, ya know?

[workjw]

Just wanted to say hi and welcome everyone to the SN board!