RE: Parents with Children of special/high needs children support thread
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RE: Parents with Children of special/high needs childre... - 9/23/2008 9:59:14 PM
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NotDoneYet
Posts: 284
Joined: 12/11/2007
From: Virginia
Status: offline
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Y'all can skip this if you want...it's sort of a vent...
Katie is in the hospital with pneumonia...aaaaarrrrrgggggghhhhhhhh.
I've gotten exactly 10 hours of sleep since Sunday Morning.
She MIGHT be getting discharged tomorrow morning...we'll see how the night goes. Her O2 sats had been falling into the 80's while she slept, so she was on O2. Today, at nap time, she stayed over 90 for the 3 hours she slept...SO...if she stays that way tonight, she'll go home in the morning...I hope so...
Here we go again...another round of specialists, another round of tests...
Work, home, kids, my mother...my house is a disaster, there's dishes to be washed, clothes to be washed...
I'm just worn out!!!
NDY
_____________________________
Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/24/2008 8:59:06 AM
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KatMack
Posts: 1074
Joined: 4/12/2005
From: Along the Canopy Roads
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((((NotDoneYet)))) I'm praying for you and Katie right now.
Kim Q- We do "Family Time" at home once a week and it's really opened up some great conversations. For our family time, we open with prayer, then do a fun activity that ties in with a Biblical story or principal. We have several of the activities available for free on our church website if you'd like to look (here). They're great because they usually get the kids active in the learning and I've noticed that when my son's activily involved, he's more likely to talk and open up about what he's thinking and feeling. Our Family Time includes my seven year old, my two year old and my one year old. Granted the little ones spend most of the time just running around like monkeys, but they're part of it!
--Kat
_____________________________
<-- My sweet blessings.
"God will do what God will do. What I'm responsible for is to believe he's all he says he is and obey what he tells me to do. " -magdaleine
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RE: Parents with Children of special/high needs childre... - 9/24/2008 6:53:35 PM
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nicole6598
Posts: 3817
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NDY- praying for you and your family! Has she ever had pneumonia before? Is there anyone who can come and help with the housework?
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Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 9/24/2008 7:37:47 PM
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NotDoneYet
Posts: 284
Joined: 12/11/2007
From: Virginia
Status: offline
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Thanks for the prayers Nicole!
She's home!!!!
She's never had pneumonia before...I don't know where it came from...Saturday she was her normal LIVELY self, by Sunday morning she was a limp dishrag! She's home now...back to her usual self...but on steriods and antibiotics and inhalers...
We go back to the doctor's office tomorrow morning...her blood sugars were elevated so we're going in for a fasting blood sugar...rule out diabeties...
HOLY COW...enough is enough!!!!
NDY
_____________________________
Remember, normal is just a setting on the dryer!
Ranting and raving: diaryofaravingmom.blogspot.com
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RE: Parents with Children of special/high needs childre... - 9/24/2008 7:47:42 PM
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nicole6598
Posts: 3817
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Will continue to pray!
YAY for being home!!!
Sandy how are you doing? Any news on more evaluations?
_____________________________
Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 9/25/2008 1:44:15 PM
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KatMack
Posts: 1074
Joined: 4/12/2005
From: Along the Canopy Roads
Status: offline
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If y'all could lift Marshall up in prayer today. He's in Jacksonville with his daddy for his 14th or 15th laser treatment. The cell phone's almost out of juice and they don't have the charger so Will told me if I don't hear from them, all's well. That approach does not sit well with this mom! He was scheduled to go in at 11:30, so I know he's out now and they are probably on their way home, but not hearing anything has left me quite nervous... I guess I'm the one that really needs your prayers right now! I'm a nervous wreck and not doing too well at the moment.
--Kat
_____________________________
<-- My sweet blessings.
"God will do what God will do. What I'm responsible for is to believe he's all he says he is and obey what he tells me to do. " -magdaleine
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RE: Parents with Children of special/high needs childre... - 9/25/2008 5:59:24 PM
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nicole6598
Posts: 3817
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Kat I don't know what time it is there now but I have just prayed for you all!!
Let us know what happens!
_____________________________
Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 9/26/2008 11:15:36 AM
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KatMack
Posts: 1074
Joined: 4/12/2005
From: Along the Canopy Roads
Status: offline
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Thank you, Nicole! Will had mercy on this poor nervous mom and called me when they left Jacksonville to let me know it all went well and they were on there way home. They got back just in time for dinner.
Marshall looks quite beat up and is in a pretty foul mood about it all. He keeps asking me why he has to have a "stupid birthmark" and why it couldn't be a "normal birthmark" that doesn't need treatments. We took some time to pray and thank God that He has a reason for Marshman having his PWS. I made sure that we prayed and confessed our confusion and lack of understanding of God's plan, but thanking Him for it. That seemed to help him quite a bit last night.
--Kat
_____________________________
<-- My sweet blessings.
"God will do what God will do. What I'm responsible for is to believe he's all he says he is and obey what he tells me to do. " -magdaleine
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RE: Parents with Children of special/high needs childre... - 9/26/2008 6:05:47 PM
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nicole6598
Posts: 3817
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I second Donna, you did a great job with him!!
Did the laser treatment go ok then?
_____________________________
Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 9/26/2008 10:06:48 PM
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ladyingrace1979
Posts: 411
Joined: 3/14/2008
From: Fresno CA
Status: offline
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quote:
ORIGINAL: KatMack
((((NotDoneYet)))) I'm praying for you and Katie right now.
Kim Q- We do "Family Time" at home once a week and it's really opened up some great conversations. For our family time, we open with prayer, then do a fun activity that ties in with a Biblical story or principal. We have several of the activities available for free on our church website if you'd like to look (here). They're great because they usually get the kids active in the learning and I've noticed that when my son's activily involved, he's more likely to talk and open up about what he's thinking and feeling. Our Family Time includes my seven year old, my two year old and my one year old. Granted the little ones spend most of the time just running around like monkeys, but they're part of it!
--Kat
We do family devotional time most nights but we get nothing out of them, we ask questions and sometimes do activites but very little comes out of them.
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RE: Parents with Children of special/high needs childre... - 9/28/2008 8:45:12 AM
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iampiper13
Posts: 71
Joined: 5/31/2008
From: Maryland
Status: offline
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Our 7 year old has Spinal Muscular Atrophy type2. She is in a power wheel chair and has the muscle strength of a 7 month old but her brain is unaffected (although I think shes a little weirder then most 7 yo's lol) Shes had numerous hospitalizations all during cold and flu season, pneumonia, lung collapses and RSV. The last year and a half have been good with only 2 hospital stays and one intense home stay. Last spring she went to her first MDA camp and had a blast, she came home much more sure of herself and not nearly as shy! Her equipment includes a nebulizer, the Vest, a cough assist and a bi-pap, she also wears a TLSO (can't remember what it stands for) that keeps her spine straight, we know eventually she'll have to have back surgery.
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 9/28/2008 2:28:23 PM
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uponeagleswings
Posts: 1626
Joined: 4/12/2005
From: Out here in the desert
Status: offline
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Steven- I'm glad your daughter is doing so well! For a little while I worked with a kiddo who has SMA-I. He's about 3.5 now and doing pretty well!
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RE: Parents with Children of special/high needs childre... - 9/28/2008 2:37:19 PM
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iampiper13
Posts: 71
Joined: 5/31/2008
From: Maryland
Status: offline
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Thank you but I can honestly say that all Praise goes to God without Him we couldn't do this. The type1's are very "labor" intensive and their life expectancy is getting better all the time. Callie is a weak type2 so although shes more active then type1's we have some understanding of what they have to go through. Your type1 family most likely already knows about this but theres alot of info at www.fsma.org and also a mailing list that is mostly type1 friendly, pm me if you'd like the url for SMA Support.
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 9/28/2008 2:45:58 PM
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KatMack
Posts: 1074
Joined: 4/12/2005
From: Along the Canopy Roads
Status: offline
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quote:
We do family devotional time most nights but we get nothing out of them, we ask questions and sometimes do activites but very little comes out of them.
Some children just take longer to make faith their own. I think you are doing a wonderful job with them and it will come in time. I know patience is hard (especially when it comes to our children's spirituality) but sometimes that is the road we have to take. Keep up the devotion times and keep the conversation open and they'll eventually open up.
--Kat
_____________________________
<-- My sweet blessings.
"God will do what God will do. What I'm responsible for is to believe he's all he says he is and obey what he tells me to do. " -magdaleine
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RE: Parents with Children of special/high needs childre... - 9/28/2008 7:21:26 PM
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uponeagleswings
Posts: 1626
Joined: 4/12/2005
From: Out here in the desert
Status: offline
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quote:
ORIGINAL: iampiper13
Thank you but I can honestly say that all Praise goes to God without Him we couldn't do this. The type1's are very "labor" intensive and their life expectancy is getting better all the time. Callie is a weak type2 so although shes more active then type1's we have some understanding of what they have to go through. Your type1 family most likely already knows about this but theres alot of info at www.fsma.org and also a mailing list that is mostly type1 friendly, pm me if you'd like the url for SMA Support.
I do know that they're involved with the SMA support groups. Mom has done fundraising and all sorts of things here locally.
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RE: Parents with Children of special/high needs childre... - 9/30/2008 5:18:01 PM
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ladyingrace1979
Posts: 411
Joined: 3/14/2008
From: Fresno CA
Status: offline
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Hi Steve,
I just wanted to say welcome. I have three girls. My oldest is developmentally "normal" she only has some fine motor issues and scoliosis, but she has been out of her Boston brace for 4 years. Something doctors said wouldn't happen until she was done growing. Yeah God!
My twins have developmental delays, they are 10 and function at about a 6 or 7 year old level. They were preemies and also had a lot of respiratory stuff, including RSV, twice. Then they got the shot! Yeah again.
Anyway, welcome to the group, I hope you get lots of support,
Kim Q
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RE: Parents with Children of special/high needs childre... - 9/30/2008 7:53:12 PM
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Auben
Posts: 1601
Joined: 4/13/2005
From: Where pines tower and cranberries float
Status: online
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I just really need to be lifted in prayer today. I'm having trouble getting Luke to eat or drink right now (and for the last 2-3 weeks). The less he eats and drinks the less he wants to and he's so cranky. I spend most of the day trying to deal with him and around him and get him to drink enough so his kidney's keep functioning.
I can't help but second guess the rest of my life.
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Parents with Children of special/high needs childre... - 9/30/2008 8:59:33 PM
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nicole6598
Posts: 3817
Status: offline
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Praying for you Tamara and Luke!!
_____________________________
Proud Aussie, Wife, Mother, Woman!
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RE: Parents with Children of special/high needs childre... - 9/30/2008 9:03:04 PM
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iampiper13
Posts: 71
Joined: 5/31/2008
From: Maryland
Status: offline
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Auben will be Praying for you, is a feeding tube an option? Callie has one that although we don't use for feedings except during hospital stays we do use it for meds. We've been asked a couple of times about removing it but it just makes giving her meds and such so much easier.
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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RE: Parents with Children of special/high needs childre... - 9/30/2008 9:59:06 PM
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iampiper13
Posts: 71
Joined: 5/31/2008
From: Maryland
Status: offline
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I call it her bullet -proof vest lol
_____________________________
God Bless
Steve
Psalms 138:3 CEV When I asked for your help, you answered my prayer and gave me courage.
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The doctor didn't laser around his eye this time- that part fades much easier, so we only hit that part every other treatment. The ones where they zap his eye are the worst. The poor little guy's eye just swells shut. 
Our little guy (19 months) likes to stick his fingers in the holes. And sometimes pencils too.
