Small Talk: The Prayer Closet

[wanderwoman]

The mods might burn it down, but would more likely allow pics in the Prayer Closet. I bet everybody would like to "meet" her. Glad you're all doing so well.

I would love to show off my baby girl. However, there are a few reasons I'm delaying that. m

*My husband is in federal law enforcement through the NPS. He may have 99 positive encounters with the public, but occasionally, he has a one negative encounter and he's wary (with our first child) of giving any nut job a target. He doesn't even use Facebook because he doesn't want pics of us public.

* Maisie hasn't met several extended family and friends because of the distance between our home and the hospital. It would feel strange introducing her to the public before our friends. I had her pic as my user pic, but even that made DH uncomfortable. We agreed a long time ago that there were certain hard no's that either of us could institute and he felt it had been up long enough.

* Maisie has health issues and is entitled to privacy. I know I share that with you but I worry about her sense of dignity in putting up pictures of her in the NICU. When she's out of the hospital and doing normal baby stuff, I will probably share. I know I wouldn't want pictures of me feeling bad online.

* I don't want to be a hypocrite. I think the Duggars put too much of Josie's life on screen. Maisie deserves privacy.

I hope that doesn't offend anyone.

[Absolom]

If you never feel comfortable putting her picture on the internet, that's fine and it's your right.  I know my daughter was very unhappy when an aunt posted a picture of their son that her husband had shared with family.  Parents get to decide that.  

[Fuzzysox]

I think a picture of her hand or her little feet would be a good compromise.

[jcbrown]

Wanderwoman, you are by no means a hypocrite. You are a private citizen with every right to control you and your family's public personae. And you are a thoughtful parent looking out for your girl. Thank you for sharing as much of your lives as you do,

[Jenniferbug]

I remember being LIVID when my husband's aunt shared a picture of our then newborn daughter that he had posted on Facebook on her own page. Likewise when my brother-in-law used a picture of my daughter on a Go Fund Me page for my father-in-law. I contacted him multiple times a day until he took it down. I may be a little paranoid, but you really never know and have to find your own comfort level.

Wanderwoman, I am so glad to hear that Maisie is improving, and I wish you luck in researching all your options for her. I can't imagine how overwhelming that must be! Stay strong, mama!

[Wellfleet]

I would love to show off my baby girl. However, there are a few reasons I'm delaying that. m

*My husband is in federal law enforcement through the NPS. He may have 99 positive encounters with the public, but occasionally, he has a one negative encounter and he's wary (with our first child) of giving any nut job a target. He doesn't even use Facebook because he doesn't want pics of us public.

* Maisie hasn't met several extended family and friends because of the distance between our home and the hospital. It would feel strange introducing her to the public before our friends. I had her pic as my user pic, but even that made DH uncomfortable. We agreed a long time ago that there were certain hard no's that either of us could institute and he felt it had been up long enough.

* Maisie has health issues and is entitled to privacy. I know I share that with you but I worry about her sense of dignity in putting up pictures of her in the NICU. When she's out of the hospital and doing normal baby stuff, I will probably share. I know I wouldn't want pictures of me feeling bad online.

* I don't want to be a hypocrite. I think the Duggars put too much of Josie's life on screen. Maisie deserves privacy.

I hope that doesn't offend anyone.

 

Trust your gut reaction, wanderwoman. No one should ever feel reticent about NOT using Facebook. One of my cousins' husbands works for the Secret Service. Not the sexy Presidential protective detail stuff - he's in check fraud, like Tom Hanks' character in Catch Me If You Can. Anyway he says that Facebook, purely on the basis of its super-massive size, is "virtually" - LOL - irresistible to hackers and it's just a matter of time before some kind of monumentally-nasty event will occur. Told us enough that I never joined Facebook, and never will.

 

PS - I should add my cousin-in-law says the same thing about Twitter, Instagram etc. All the really REALLY big social media.

Edited April 27, 2015 by Wellfleet

[amitville]

I would love to show off my baby girl. However, there are a few reasons I'm delaying that. m

*My husband is in federal law enforcement through the NPS. He may have 99 positive encounters with the public, but occasionally, he has a one negative encounter and he's wary (with our first child) of giving any nut job a target. He doesn't even use Facebook because he doesn't want pics of us public.

* Maisie hasn't met several extended family and friends because of the distance between our home and the hospital. It would feel strange introducing her to the public before our friends. I had her pic as my user pic, but even that made DH uncomfortable. We agreed a long time ago that there were certain hard no's that either of us could institute and he felt it had been up long enough.

* Maisie has health issues and is entitled to privacy. I know I share that with you but I worry about her sense of dignity in putting up pictures of her in the NICU. When she's out of the hospital and doing normal baby stuff, I will probably share. I know I wouldn't want pictures of me feeling bad online.

* I don't want to be a hypocrite. I think the Duggars put too much of Josie's life on screen. Maisie deserves privacy.

I hope that doesn't offend anyone.

Wanderwomen you could never offend anyone,  Do what your husband and you are comfortable with.  

[Marigold]

Wandewoman,

so sorry Maisie is dealing with a hearing loss. I know from professional experience (don't want to disclose my specific profession) that there are so many options out there. I've seen children make huge progress. Technology and therapy together...I'm sure your audiologist will be putting you in touch with a team of specialist from Early Intervention. In case they don't, insist and don't let them tell you no. Even as an infant, she is entitled to a ton of services because she has a diganosed hearing loss.

I had a Deaf professor in grad school way back in the early 90's. That was the first time I was exposed to Deaf culture. (an that capital D for Deaf is what I learned!)

You do what's best for your child and give her all the opportunities you can, whatever you choose.

I have personally seen hearing imparied children make huge progress and keep up with their peers....keep believing good things will happen!

So glad she is doing well.

[Catlyn]

Not offended, Wanderwoman, just glad that Maisie is doing so well. I get really anxious when I see people putting their children on facebook and the like. I know they're proud of their kids and grandkids, but there's a lot of crazies out there. I see her in my mind as a sweet little baby, smiling at Mommy and Daddy.  (I'm childless so for the first few months all babies seem to look like Gerber's baby on the jar, with a few differences allowed for standout family features/race.)

 

I've heard about the anti-cochlear implants before, and was glad to hear from Jellybeans about another side. You will do what you feel is right for Maisie. It's up to you, your husband and Maisie. If someone else gets upset, that's their problem.

[Jellybeans]

Cochlear implant users gets their own streamer at some point (if technology doesn't get rid of it for something better) and I love it.

I think most people have their TV's turned up too loud. With my streamer, I have full contol over the volume control with both the hearing aid and implant. I do notice when I am listening to a concert I tend to go loud, loud and louder... knowing it can't damage my hearing. :-)

But TV regular programming is too loud for many cochlear users.

Edited April 28, 2015 by Jellybeans

[msblossom]

Cochlear implant users gets their own streamer at some point (if technology doesn't get rid of it for something better) and I love it.

I think most people have their TV's turned up too loud. With my streamer, I have full contol over the volume control with both the hearing aid and implant. I do notice when I am listening to a concert I tend to go loud, loud and louder... knowing it can't damage my hearing. :-)

But TV regular programming is too loud for many cochlear users.

Especially the commercials. The volume increase is ridiculous.

[Wellfleet]

Especially the commercials. The volume increase is ridiculous.

 

Amen to that! And thank God for remotes and my friend, the Mute button.

Edited April 28, 2015 by Wellfleet

[Ilovemylabs]

I will be excusing myself from this forum for a while because some of the remarks made about the Duggars are getting too nasty for me.  We (myself included) snark about them and most of us disagree with their chosen lifestyle. This is fair because they have put themselves out there.  We can't understand their fame.  But there is, in my opinion, too much speculation about them.  A lot comments that disturb me have to do with this speculation.  And some remarks are just downright nasty. The comment that brought me to this decision was one about Josh.  I am paraphrasing, but the poster said that if 'Josh lost his job he could work for the Westboro Baptist Church.  They were made for each other.'  That went too far in my opinion.  My belief is that, though their lifestyle and beliefs are not mine, they (the family) are not as bad as some seem to think.  So I wish you all well, but I will be absent for a while.

[Mrsjumbo]

Wanderwoman, I'm not on Facebook either & neither is Mr Jumbo. If/when my kids go on I will join, but I prefer my privacy right now.

I think you are wise. I've seen stories about people taking images & using those to fundraise for themselves. "Maisie in ICU" photo could certainly be stolen for those purposes.

Maybe I'm just paranoid but better safe than sorry.

[ms.o]

Bringing this over

3girlsforus, on 29 Apr 2015 - 5:34 PM, said:

I have a question for those of you who have experience with epilepsy. How is it diagnosed? Obviously there are such things as febrile seizures and I was surprised to find out from a nurse friend of mine that they can be longer than the 30 sec - 1 min I thought. And if you have one febrile seizure you probably will have more before you outgrow them. That said, this seems like so much more than that. Are there tests for epilepsy or is it diagnosed by evaluating seizures? Is there a chance Josie hasn't been diagnosed with epilepsy yet but is being watched for patterns or increased frequency in seizures?

Speaking only for myself - I wasn't diagnosed until my 3rd one. Mine have been 5-6 years apart. I had numerous MRIs, CT scans, EEGs, and EKGs. Most of the tests were done after first seizure to make sure there wasnt a tumor or a heart condition. After the 3rd my neurologist just diagnosed me and put me on meds Edited April 30, 2015 by ms.o

[mythoughtis]

Regarding epilepsy (or seizure disorder). diagnosis and prognosis.

 

Our son had an unexplained seizure at 6, had an abnormal EEG, normal MRI, was on medicine for 2years. weaned off, and declared no more at risk than anyone else.  At 15, he had another.  This time, a seizure disorder diagnosis was given (because it was the second seizure in his lifetime), again, abnormal EEG, normal MRI, medicine.  4 years later, they were discussing weaning off the medicine.  He went off to college, forgot his meds, and had a seizure, this cycle was repeated over the next 3 years. 

Note to others: a sudden stoppage of medicine for even a couple days can result in seizures (yes, plural).  A repeat of the MRI was done, just to see if better technology showed anything, it did not.  He is left with taking medicine the rest of his life, and risking seizures if/when he forgets to take it  - or when he gets any of several risk factors (lack of sleep, illness, stress, alcohol, and so forth).

 

Can he drive?  Not right now, his last seizure was less than 6 months ago.  Will he drive then? Unknown, his license was cancelled as he is thought to have had a seizure while driving - so who knows when he will get it back.   Can he work?  I'm proud to say he has a bachelors degree and just got a fantastic job, and the company knew about his condition when they hired him.  It helps that he got the job in a big metropolitan area and can take the bus to work.

 

Are there a lot of people worse off?  Yes, he's had a total of 8 seizures in his lifetime.  There are lots of people who have more than that in an afternoon. Josie appears to be closer to my son's status - but I think she has other disabilities.  

Edited April 30, 2015 by mythoughtis

[3girlsforus]

Bringing this over

Speaking only for myself - I wasn't diagnosed until my 3rd one. Mine have been 5-6 years apart. I had numerous MRIs, CT scans, EEGs, and EKGs. Most of the tests were done after first seizure to make sure there wasnt a tumor or a heart condition. After the 3rd my neurologist just diagnosed me and put me on meds

 

So it sounds like Josie should have had MRIs, CT scans etc by now. 

[Happyfatchick]

I apologize again for suggesting that. It was really not smart and I get it. I forget sometimes that we aren't just sitting around talking, snarking (sometimes even at EACH OTHER). I just wanted to see the baby girl we've all been pulling for! Sorry again, WW.

[lookeyloo]

josie may have had tests and the Duggars may know more than they let on  Didn't James recognize it? I'm surely not giving the Duggars any awards for parenting but i also think there is a lot we don't see  

[HumblePi]

josie may have had tests and the Duggars may know more than they let on  Didn't James recognize it? I'm surely not giving the Duggars any awards for parenting but i also think there is a lot we don't see  

The reason I started watching 19 Kids and Counting is because I never saw anything negative or disappointing in the lives of the Duggar's. Things always appeared to be in control with everyone happy, everyone on the same page, praying and playing together. I thought "hmm, something's missing here" and it was, it was real life. The way the Duggar's are portrayed is exactly how they wish it to be portrayed. The fact remains that life happens to everyone, even the Duggar's. James quickly recognized the onset of Josie's seizure. He was quick to recognize it because they've all seen it before since she had several in the past. Her seizure lasted a very long time, ten minutes at least, maybe more according to Jana.

 

They said that she had a fever when they put her in the ambulance, and Michelle also said that Josie has had seizures in the past when she has a fever. Jana said that she was up and playing and wasn't sick right before the seizure so perhaps Josie had a low-grade fever. That's all it takes for a child to have a seizure when they have 'febrile seizure disorder'. The biggest danger Josie faced during her seizure was the chance of aspirating vomit. The EMT person that carried Josie to the ambulance told Jana that Josie had vomit in her mouth.

 

I think that going forward, the Duggar's will have to be more alert to any signs of fever in Josie and give her Tylenol or Ibuprophen right away. I don't think she'll be started on any anti-seizure medication since there's just too many side effect to those for a small child. They might even have a rectal suppository that can be given to Josie during a seizure to stop it from going on too long. Children that have long seizures can develop epilepsy later in life, so the duration of the seizure activity is very important.

 

I have such a huge problem with Michelle and Jim Bob flying to Chicago for a 'meeting' with the sexual molester, creepy Bill "Grabby Hands" Gothard. They were aware of Josie's health risks, they were aware a febrile seizure could occur at any time. They put that huge responsibility into the hands of their 'daughter-mother' Jana. Michelle and Jim Bob have no other agenda but their own. They feel they've done their duty having all these kids and now they can do other things with their creepy cult people and leave the kids in the hands of someone else.

[ChocolateAddict]

I've got epilepsy but mine wasn't diagnosed until my teens.  No one really noticed when I had absent partial seizures because it just looks like I was daydreaming and it wasn't until I began actually having tonic-clonic seizures that I began seeing a neurologist.  

Epilepsy is testable, to a degree.  I had an MRI to rule out a brain tumour and then two EEGs.  My normal EEG was normal but my sleep-deprived EEG was abnormal.  It turned out that I was also having myoclonic seizures in the morning, I just didn't know it (a myoclonic seizure is a brief jerk and a loss of consciousness for a few seconds).  

In a house of 18, it would be easy to miss if Josie did have epilepsy (not that I'm saying she does).  It could just be that people don't notice absent partial seizures and even if Josie sleeps with Jana, she wouldn't necessarily be able to recognise a myoclonic seizure. 

I'm not a neurologist so I'm hesitant to declare that Josie has epilepsy.  All we know is that Josie had a seizure, we don't know what medical tests or consultations she has had.  She may already have had an MRI and seen a neurologist for all we know.  So while we can speculate all we like, in the end unless the Duggar's come out an announce it, we won't know what is going on behind the scenes.  

Edited May 1, 2015 by ChocolateAddict

[Wellfleet]

I've got epilepsy but mine wasn't diagnosed until my teens.  No one really noticed when I had absent partial seizures because it just looks like I was daydreaming and it wasn't until I began actually having tonic-clonic seizures that I began seeing a neurologist.  

Epilepsy is testable, to a degree.  I had an MRI to rule out a brain tumour and then two EEGs.  My normal EEG was normal but my sleep-deprived EEG was abnormal.  It turned out that I was also having myoclonic seizures in the morning, I just didn't know it (a myoclonic seizure is a brief jerk and a loss of consciousness for a few seconds).  

In a house of 18, it would be easy to miss if Josie did have epilepsy (not that I'm saying she does).  It could just be that people don't notice absent partial seizures. and even if Josie sleeps with Jana, she wouldn't necessarily be able to recognise a myoclonic seizure. 

I'm not a neurologist so I'm hesitant to declare that Josie has epilepsy.  All we know is that Josie had a seizure, we don't know what medical tests or consultations she has had.  She may already have had an MRI and seen a neurologist for all we know.  So while we can speculate all we like, in the end unless the Duggar's come out an announce it, we won't know what is going on behind the scenes.  

 

Well, one thing is a sure bet. If Josie does have epilepsy, it will never be announced. Not even now, after the seizure and its aftermath has been broadcast. Boob & Me-chelle will never admit that the Little Miracle is not just exactly that. Unless Boob can figure out some way to make $$ with it.

[Mrsjumbo]

Kind of like how John Travolta would not publicly admit that his boy had autism.

[Micks Picks]

Seizures sure can manifest differently.  My husband had one, was pretty much what I'd expect one to be.  Not to offend, but mom's dog had seizures and howled like the hounds of hell, jerked, heart stopped beating, limbs all over the place.  My dog, at animal hospital with bells on her.  I asked why and they said she started seizures and that was to alert them if they weren't looking.  She had what they said was a seizure and all it was, was her tapping her foot.  If I had seen that at home, I would not have considered it anything.

[SpaghettiTuesdays]

This might sound strange, but I really like the Duggar forums. I don't know if it's because a lot of us have the same interests and maybe personalities, but I love how we're all different ages, backgrounds, etc. and everyone seems pretty interesting. It's weird to feel a connection via internet with strangers, but I really do like the community of this forum.

[Happyfatchick]

I learned this week that I'm going to be a grandma again (this makes #7). My youngest son and DIL are due Dec 1. They are so YOUNG (21) and poor, but SO determined to do this on their own. My older kids are 13 and 15 years older than my youngest, and I was poor and young... And they are GREAT kids. This one's a girl, I can feel it. My oldest is having a stroke about the young, inexperienced and poor having a baby - but I did it, and HE did it and we all survived. I'm not so close to this DIL, and that will be my challenge as the other 2 were all about me being there with a front row seat. (Gonna have to work on my people skills). I actually got to be in the room with them for deliveries of all but 2 of the other grands. One of those was born in Texas and I went immediately after delivery, and one was born IN A CAR!!! (Missed that one, obviously.).

This youngest works at Delta Airlines (HUGE employer in our area), he's a supervisor in the reservations area. He's also a Marine reservist currently - although when they had the big cutback, he (along with 16,000 of his brothers) was cut out. He could have come home and lived a life knowing he'd survived the Marines, but he didn't feel like he'd fulfilled his service to the country. He went straight to the recruiters office and signed up for Air Force reserves. I know that's corny and cheesy, but I was so amazingly PROUD of that kid for doing that. (loooong history of military service in our family). His wife has one semester of classes and one semester of student teaching before she is done, and IF the baby goes to term and there are no problems, she won't miss a semester. (YAY!)

They bought a house last fall (TWO houses actually - there's a rental property on THEIR property). Been married 2 years (got married before a deployment to Afghanistan for the benefits). They are very young. They are poor. But they are going to be fine. The thing is - with THIS baby, I am at a place in my life where I could help them financially. I couldn't do much with the olders, but helped when they needed it. Now that I potentially "could" help - they won't take the assistance. GOOD FOR THEM!!!!!

Just to round out the story... My oldest son is a Station Manager for Delta at the Atlanta airport, and my middle (daughter) is an RN. I did good, right?????

I'm sorry about posting this on here but I wanted to share with SOMEBODY and they'd KILL me if I did Facebook and stole their thunder! By the way, they call me Giggy (the grands).

[GEML]

Congratulations! We were fairly young (especially by DC standards) and definitely poor many years when we had our first, so I know it can be done.

[Wellfleet]

I learned this week that I'm going to be a grandma again (this makes #7). My youngest son and DIL are due Dec 1. They are so YOUNG (21) and poor, but SO determined to do this on their own. My older kids are 13 and 15 years older than my youngest, and I was poor and young... And they are GREAT kids. This one's a girl, I can feel it. My oldest is having a stroke about the young, inexperienced and poor having a baby - but I did it, and HE did it and we all survived. I'm not so close to this DIL, and that will be my challenge as the other 2 were all about me being there with a front row seat. (Gonna have to work on my people skills). I actually got to be in the room with them for deliveries of all but 2 of the other grands. One of those was born in Texas and I went immediately after delivery, and one was born IN A CAR!!! (Missed that one, obviously.).

This youngest works at Delta Airlines (HUGE employer in our area), he's a supervisor in the reservations area. He's also a Marine reservist currently - although when they had the big cutback, he (along with 16,000 of his brothers) was cut out. He could have come home and lived a life knowing he'd survived the Marines, but he didn't feel like he'd fulfilled his service to the country. He went straight to the recruiters office and signed up for Air Force reserves. I know that's corny and cheesy, but I was so amazingly PROUD of that kid for doing that. (loooong history of military service in our family). His wife has one semester of classes and one semester of student teaching before she is done, and IF the baby goes to term and there are no problems, she won't miss a semester. (YAY!)

They bought a house last fall (TWO houses actually - there's a rental property on THEIR property). Been married 2 years (got married before a deployment to Afghanistan for the benefits). They are very young. They are poor. But they are going to be fine. The thing is - with THIS baby, I am at a place in my life where I could help them financially. I couldn't do much with the olders, but helped when they needed it. Now that I potentially "could" help - they won't take the assistance. GOOD FOR THEM!!!!!

Just to round out the story... My oldest son is a Station Manager for Delta at the Atlanta airport, and my middle (daughter) is an RN. I did good, right?????

I'm sorry about posting this on here but I wanted to share with SOMEBODY and they'd KILL me if I did Facebook and stole their thunder! By the way, they call me Giggy (the grands).

 

You certainly DID do well, HappyFatChick - with every right to be proud. And congrats on the upcoming grandchild! :>)

[wanderwoman]

:fingers crossed: We are transitioning home in four days!

Maisie stats: 7lbs, 9oz - she is a little slow on the gain (her weight is like a yoyo), but she eats well and poops well.

Her vision seems unaffected at this point.

She smiles and moves all extremities easily. If you recall, one side of her body was weak from a brain bleed early on, but her therapist said she has caught up well. He thinks she will be left dominant.

She makes verbal noises (coos and gibberish).

Her lungs are still fragile. We will have to be extra vigilant over the next two years. Our insurance has decided that her RSV immunizations aren't covered so we will be paying $1800 per injection. But, they WILL cover her oxygen, medications, and machines needed for home respiratory care (wtf, right?). We plan on keeping her home and isolated for at least three months. Hubby comes into contact with tens of thousands of tourists every summer so we are installing a decontamination station (haha, just a sink and counter with sanitizer and lysol) in the garage. I'm pretty sure we will be solely responsible for keeping the antibacterial wipe people in business.

Due to our home location being way, way outside the reach of office based PT and OT services, we are going to take out a loan to hire a live in, private therapist for the summer. It's ridiculously costly, but we'd be spending three hundred a week in gas and lodging to get from home to the nearest Children's Hospital anyway. And, the travel would be hard on Maisie.

We're also taking ASL courses through an online company and one of the deaf interpreters who work with DH will pop by once a week to help us learn faster. I have so many questions about how Maisie will know that signs are words. It seems like such a hard way f o r an infant or toddler to communicate.

That's the plan for now.

Edited May 3, 2015 by wanderwoman

[Micks Picks]

Happyfatchick, this young couple has done extremely well.  I'm so proud of them and I don't even know them, you must be bursting with pride and love.  Congratulations!

[Mrsjumbo]

Wow, Maisie is getting so big!! My twins were 5 lb 12 oz & 6 lb. 5 oz when I had them & brought them home 2 days later.

Keep us posted on how her therapies, feeding, etc are going. Hope she continues to do well!

[JenCarroll]

Wanderwoman, I know you'll get a ton of advice and a lot of it will be conflicting, but I would urge you to take the time for this video. We don't have a deaf child, but our close friends do, so we've been around this subject for a couple of years. This was the one video that made our friends truly believe it would all work out. (And it is; their little girl is doing GREAT.)

One Deaf Child: Presentation by Rachel Coleman - YouTube

www.youtube.com/watch?v=b1VUpNv80IQ

ETA This is the person who does the Signing Time DVD's referenced by Marigold, below. Same people. And I've seen a recent video of the now-teenage daughter with her implant -- she speaks English beautifully, perfectly.

Edited May 5, 2015 by JenCarroll

[Wellfleet]

Terrific news on the Maisie front! Here's hoping all goes according to plan. You guys certainly sound like you're as prepared as any parents could possibly be in this kind of situation. I was getting a very headquarters-on-the-eve-of-the-Normandy-Invasion vibe as I read this, and that's good! Maisie knows how to pick 'em, that's for sure. I think she's going to do very well with the ASL and sign language too. These days it's even becoming quite common for hearing babies to learn sign language, at the age of one or so, especially in day-care centers, so the staff can be more attuned to the kids, their needs etc. They can't say the words yet but they do really well signing - it's neat to see! I'm sure it will all make sense and become clear as you start to move through it, though now it must seem very daunting. Thanks for updating us and take care! :>)

Edited May 3, 2015 by Wellfleet

[Happyfatchick]

WW, the cost of the immunization is outrageous!!! I've never known of anyone having to pay out of pocket for it, and almost choked on the cost! Did you (are you) fighting the insurance company about it? Why on earth would they agree to pay for the TREATMENT equipment/meds but not cover the preventative care? How ridiculous is that?

[Micks Picks]

Well, no insurance that I know of covers absolutely everything.  Some are weighted heavily in prevention; some cover little prevention but kick in for catastrophic.  I really don't think the cost of home oxygen is so high.  I rented a unit for like 40 a month and bought a portable oxygen concentrator for a few thousand, as I recall.  Much better than hauling a tank around.  The shots at $1800 are extreme.  I don't know what kind they are, but geeze.  If I have to pay for the shot in the eye myself it is over $1800 per shot.  Unbelievable.  The home therapist is a great idea.  It will be company and somebody to talk to about things other than medical, I hope.  It's a great idea to get the stress level down.  And HOME doesn't that sound great?  A bed to sleep in, a place to make a snack, no place like home.

[GEML]

My daughter hears all right, but had a significant speech delay. We use the sign language to help her communicate and reassure her that yes, she certainly is capable of learning a language, just not the one most are speaking. (We've moved around so much we wanted to be settled in one place for more than a few months before starting therapy, which she will start this summer.). It's amazing how much they know. Language and the desire to communicate seems to be hard wired in. Watching Maisie, you may find yourself blow away by how much she can do! :)

[CalicoKitty]

Wanderwoman, I have been following your posts with great interest.  I am a recently retired NICU nurse, and it gives me such great joy to read about the care your Maise is getting. You have given me a whole new perspective from a parent's point of view.  I wish you all the best, and look forward to following your progress.

 

On another note:  I just finished reading GML's A MIDWIFE'S TALE.  I really enjoyed this book.  It is very well written and tells a very interesting story.  I highly recommend it to anyone who is looking for an interesting read.

[truthtalk2014]

:fingers crossed: We are transitioning home in four days!

Maisie stats: 7lbs, 9oz - she is a little slow on the gain (her weight is like a yoyo), but she eats well and poops well.

Her vision seems unaffected at this point.

She smiles and moves all extremities easily. If you recall, one side of her body was weak from a brain bleed early on, but her therapist said she has caught up well. He thinks she will be left dominant.

She makes verbal noises (coos and gibberish).

Her lungs are still fragile. We will have to be extra vigilant over the next two years. Our insurance has decided that her RSV immunizations aren't covered so we will be paying $1800 per injection. But, they WILL cover her oxygen, medications, and machines needed for home respiratory care (wtf, right?). We plan on keeping her home and isolated for at least three months. Hubby comes into contact with tens of thousands of tourists every summer so we are installing a decontamination station (haha, just a sink and counter with sanitizer and lysol) in the garage. I'm pretty sure we will be solely responsible for keeping the antibacterial wipe people in business.

Due to our home location being way, way outside the reach of office based PT and OT services, we are going to take out a loan to hire a live in, private therapist for the summer. It's ridiculously costly, but we'd be spending three hundred a week in gas and lodging to get from home to the nearest Children's Hospital anyway. And, the travel would be hard on Maisie.

We're also taking ASL courses through an online company and one of the deaf interpreters who work with DH will pop by once a week to help us learn faster. I have so many questions about how Maisie will know that signs are words. It seems like such a hard way f o r an infant or toddler to communicate.

That's the plan for now.

Best of luck to you and your baby!  I just read all I could of your story and I cannot imagine what you have gone through.  So happy Maisie is coming home!  

 

It was so weird because after reading your story, this video was on my Facebook page today from a page that I subscribe to.  I thought you might like it.

 

https://www.facebook.com/KnowledgeOfToday/videos/10200736298473484/

[Jellybeans]

Sign language is fun, I still use it when I need to. Remember it IS another language and not "signed english".

I did not teach my kids to sign until they were adults, no particular reason except I lived in their non-signing world.

Never forgot the time my interpreter/friend and I were chatting via ASL and she was telling me a rather risqué story. Soon, a tiny old woman came up to us, patted both of us on the head and signed "both, so open". We were so embarrassed to be caught talking in public about something private.

Now I assume everyone knows sign.

[amitville]

:fingers crossed: We are transitioning home in four days!

Maisie stats: 7lbs, 9oz - she is a little slow on the gain (her weight is like a yoyo), but she eats well and poops well.

Her vision seems unaffected at this point.

She smiles and moves all extremities easily. If you recall, one side of her body was weak from a brain bleed early on, but her therapist said she has caught up well. He thinks she will be left dominant.

She makes verbal noises (coos and gibberish).

Her lungs are still fragile. We will have to be extra vigilant over the next two years. Our insurance has decided that her RSV immunizations aren't covered so we will be paying $1800 per injection. But, they WILL cover her oxygen, medications, and machines needed for home respiratory care (wtf, right?). We plan on keeping her home and isolated for at least three months. Hubby comes into contact with tens of thousands of tourists every summer so we are installing a decontamination station (haha, just a sink and counter with sanitizer and lysol) in the garage. I'm pretty sure we will be solely responsible for keeping the antibacterial wipe people in business.

Due to our home location being way, way outside the reach of office based PT and OT services, we are going to take out a loan to hire a live in, private therapist for the summer. It's ridiculously costly, but we'd be spending three hundred a week in gas and lodging to get from home to the nearest Children's Hospital anyway. And, the travel would be hard on Maisie.

We're also taking ASL courses through an online company and one of the deaf interpreters who work with DH will pop by once a week to help us learn faster. I have so many questions about how Maisie will know that signs are words. It seems like such a hard way f o r an infant or toddler to communicate.

That's the plan for now.

Tears of joy rolling down my checks.  You have overcome so many obstacles to finally take Our Maisie home.  May I be the first to wish you a Happy Mothers Days .As always i am sending ffhugs kisses and love to you ,hubby and our Maisie.

Edited May 4, 2015 by amitville

[Jellybeans]

Yes! Your first Mother's Day, followed by DH's first Father's Day is coming up! How sweet that is. I will be thinking of you on your special day.

[Marigold]

ASL is no different than spoken language.

Each combination of sounds form a word and that word is symbolic of an object, thought, action, description etc.

 

Each movement of the fingers strings together to form a sign and that sign is symbolic of objects, thought, action, description etc. Deaf children "babble" in sign language which I find fascinating.

 

 OT/PT is a great! I'm impressed how you are solving your location problems. No speech therapy? 

 

Congrats on the progress!!.  hugs. 

[Jellybeans]

There is more than one kind of sign language. ASL, SEE, Pidgin (probably my favorite) I graduated from a deaf school but I do not believe in deaf culture. Many Hearing people (and some deaf) find the idea of a deaf culture magical and mystical. Cochlear implants threaten the livelihood of interpreters, deaf schools, etc. which is fine by me. If we can all hear then that's good, no?

I disagree with your statement that ASL is no different than spoken language. No two interpreters will come up with the same translation if they had to reverse interpret a signer. I use interpreters in group settings and correct them when they verbally interpret my signs wrong. I feel sorry for deaf people who cannot catch those errors.

There is lots of politics in the deaf world because of differing agendas. When deaf people prefer their own children to be deaf it is time to step back and think about what's going on.

Most parents make good decisions but it's their decision to make.

[Skittl1321]

 

I disagree with your statement that ASL is no different than spoken language. No two interpreters will come up with the same translation if they had to reverse interpret a signer.

This is my experience translating other languages too.

 

One of my jobs at work is to read the back-translation of documents to make sure that the translation to the other language conveys what we mean.  The back-translation is never the same as the original document, and the multiple back translations are never identical. We have different people do the back translation than did the original translation from English. (I deal with English to Spanish, French, and Arabic and then back to English.)

[zenme]

Sounds like Jana is a "daddy's girl." I have the same relationship with my parents. Mom was more strict, and harder on me, but in my dad's eyes I can do no wrong. I can speak freely with Dad, and always have, but with Mom there's a constant judgment.

[Wellfleet]

Sounds like Jana is a "daddy's girl." I have the same relationship with my parents. Mom was more strict, and harder on me, but in my dad's eyes I can do no wrong. I can speak freely with Dad, and always have, but with Mom there's a constant judgment.

 

I think this dynamic is incredibly normal and common - especially in the US. Maybe most westernized countries. And if Freud was right, maybe everywhere...

[Marigold]

No, no, I didn't mean it's identical to translate. All language translations vary. 

 

 I meant the language acquisition of ASL (or other sign languages)  follows the same pattern of language acquisition of spoken language.  It's symbolic representation of something (noun, verb etc.) WanderWoman had wondered how Maisie will figure out that the sign for "milk" represents the white liquid in a cup. It's the same pattern of language acquisition for spoken or sign. The spoken sound "milk" means the white stuff we drink and the sign for milk means the white stuff we drink. We keep saying "milk" and hand them a cup. Pretty soon they figure it out.  If you keep signing "milk" and hand them a cup, they will figure it out in apparently the same way.  I've read studies where hearing impaired children learn signs in almost the same way hearing children learn spoken language.  First objects, then action words, then combining a few words into a phrase etc. 

 

I used to sign very well years ago and was an interpreter in schools for a few years.  I have forgotten most of it now.  My kids were interested in it a while back and I was able to pick it back up again in order to help them. I've had hearing imparied toddlers on my caseload also...I love the language acquisition part of it!! 

Edited May 5, 2015 by Marigold

[Mrsjumbo]

I remember vividly being at Disney world with ds3. He was 11 mos old & I gave him some dry cereal, & he signed "more" to me. I almost started crying! I had been working with him with basic signs. I'm glad I did since he did not start talking till after age 3.

[wanderwoman]

Best of luck to you and your baby!  I just read all I could of your story and I cannot imagine what you have gone through.  So happy Maisie is coming home!  

 

It was so weird because after reading your story, this video was on my Facebook page today from a page that I subscribe to.  I thought you might like it.

 

https://www.facebook.com/KnowledgeOfToday/videos/10200736298473484/

That video caught me off guard and I'm sitting here crying.

[wanderwoman]

ASL is no different than spoken language.

Each combination of sounds form a word and that word is symbolic of an object, thought, action, description etc.

 

Each movement of the fingers strings together to form a sign and that sign is symbolic of objects, thought, action, description etc. Deaf children "babble" in sign language which I find fascinating.

 

 OT/PT is a great! I'm impressed how you are solving your location problems. No speech therapy? 

 

Congrats on the progress!!.  hugs.

I am working on a speech therapist but there seems to be a lot of dissection about when they start and if we have one locally. I'm going to guess that we don't, just given our remoteness. The OT/PT we are hiring came highly recommended by the audiologist. Maisie had almost three months of hearing and were told that, with her residual hearing in one ear, will help. There's so much to line up and implement.

Oh! We got the all clear to go home Wednesday. If I don't update, it's good news because our lives are about to get crazier. :) We are up on the transition NICU tonight.