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igloochick-- how's ds?

Posted by sjerin (My Page) on
Sun, Dec 16, 07 at 22:47

I believe you've been spending time at a hospital on the east coast, and if you don't mind, would you tell us how he's doing?


Follow-Up Postings:

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RE: igloochick-- how's ds?

I've been wondering, too. Hope you and DS are able to celebrate the holidays in some way, hospital or no. You'll be in my thoughts.


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RE: igloochick-- how's ds?

Hope the testing and treatments are going well.

I work at Johns Hopkins University and my office is a block away from Kennedy Krieger Institute. I'll be around all through the holidays.

I have a lot of my grandson's stuff, he's just your son's age. My daughter left it at my house when she, my SIL and precious grandson moved to Texas in June, said she wouldn't need it any more, she wasn't going to have any more kids - the baby is due in April!

Anyway - I have strollers, a car seat, high chair, toys, clothes - some might fit your son. I also have a house with a washer and dryer, computer, TV, etc. I'd be happy to pick you up and take you home if you want to do laundry or need anything else homelike. I'd be happy to run you around town, too, if you need to run some errands. I also have a couple of empty bedrooms, one with a crib.

There is a Whole Foods and Safeway fairly nearby, and there is a mall at the Galleria at Harborplace. Harborplace is nicely decorated this time of year, though it is cold.

Please don't hesitate to get in touch with me, you can get my email address from "my page."

Barbara Johnson


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RE: igloochick-- how's ds?

Just wanted to say I'm thinking about you and your little sweetie, and hope that you're able to find some accurate and above all, helpful information there. Christmas is the season of miracles, and I'm hoping for one for you both.


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RE: igloochick-- how's ds?

Barbara--
Your post has just about the most Christmas spirit I've heard this holiday season. Puts the true meaning of the season right back where it should be.
Thanks for the warm feeling inside.
Pamela


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RE: igloochick-- how's ds?

I guess I should be checking the conversations side more often. This is the first I've heard of any problems.

Igloochick, I hope everything is all right, or at the very least, reparable. Our prayers are with you, dear lady.


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RE: igloochick-- how's ds?

Well first, thank you all for asking, and having us in your thoughts during the holidays. Barbara in particular...I just cleaned out my SPAM folder and AOL has decided you are a spammer heh heh I had two from you. I'm heading back there (I had 50+ spams for some odd reason and most were family and close friends inquiring about my DS and DH) :( anyhoo I'm heading to email after I finish here and we have our last doctor visit this evening. Before I thank you personally for your very very wonderful offer, I want to thank you now (in case I'm late tonight!).

This is a pretty wonderful place to stay, and yes we're in Baltimore Maryland at Kennedy Krieger Institute Children's Hosptial. The staff is wonderful...the food...well that leaves a great deal to the imagination (I imagine good food while eating umm stuff LOL) And I can't find the hospital wine shop...but I continue to look daily :oP

Anyhoo, we're in week one of our eight too twelve week stay so we have a ways to go. For those who didn't read it elsewhere, my 2 year old son has been chronic fail to thrive for all of his little life, and despite traveling to hospitals and experts across the nation, they don't know why. They do know that any food (formula etc) causes him significant gastric issues so he's decided not to eat anymore. We are at the best Feeding Clinic in the nation if not the world and they're working on diagnostic issues and also on teaching him how to find his appetite back and learn to eat food. We just started the hard stuff today, and he's turned out the be...well just as stuborn as he was when we got here, but he has taken a couple of bites, so we call that progress. When they feed him they have a psychologist sit with me (on the other side of a one way mirror) and I've yet to fall apart so I may be left on my own tomorrow :o)

On the bad side, he's lost two pounds in four days, which is a bad thing for a 20 pound child, so I'm back to getting up with him every 2 hours at night to see if I can get him to eat while he's groggy so he won't lose anymore weight.

In addition to that challenge, my MIL died suddenly the day before Christmas. One reason I avoided email a bit since that date was that frankly it was just too hard to find my usual sunny side. I found her again today (she was hiding under the chair I sleep in LOL). DH is going to be able to visit us after the funeral, which will be nice, since we haven't seen him for a couple of weeks. He'll be able to spell me a couple of nights so I can get some rest and then he's back to Alaska to get to work to pay for all of this :oP

I do thank you all for your kind thoughts. I've been sporatic in my communication lately, and completely ignored email. Probably a good thing because I'd have cried when I read Barbara's wonderfully kind offer :) It's amazing how kind people can be to strangers :) In a very good way. On Christmas "Santa" came to visit and overwhelmed all of the children here with gifts (that they probably didn't need heh heh). I can't even get anyone to tell me who to thank, but we'll figure that out before we leave (maybe Barbara can help me so I can make a donation to that agency for the next holiday...when I hope NOT to be here!).

Happy Holidays all!

Dawn


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RE: igloochick-- how's ds?

Dawn-
Your son and family are in my prayers.
Your son is lucky to have such a loving, caring, and attentive mother.
May you go from strength to strength.


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RE: igloochick-- how's ds?

Dawn--I am so sorry to hear about your MIL's passing! You and your family remain in my thoughts, and I hope 2008 brings you only good things.

(((HUGS)))


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RE: igloochick-- how's ds?

God bless you and your son, Dawn. My condolences to you and your husband on the passing of his mom. That's never an easy thing, and especially with everything else going on, I don't even want to think what it's like.

You are all in our prayers.


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RE: igloochick-- how's ds?

I'm so sorry about your MIL, and the two additional pounds your son has lost. Dawn, you have a wonderful way with words - and I'm delighted Santa found his way to the hospital. Your family is in our prayers.

- Yvonne.


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RE: igloochick-- how's ds?

I'm so sorry about your MIL, and at Christmas, too. It's been a tough holiday for your family - you and your son are 5000 miles from home and in a hospital. That's pretty rough, and for your husband to lose his mother and your son to lose his grandmother makes it extra hard, I'm sure. Our best wishes and all our strength and support go out to you all.

I'll see if I can find out who Santa is, but I think it's really SANTA! :)

I'm sure you will all enjoy your husband's visit, but it will be hard to let him go, especially for Jesse. Let me know if you need anything while he's in town - a stroller or car seat, etc.

Take good care of all of you.

Barb


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RE: igloochick-- how's ds?

Oh, igloo (sorry, you're just igloochick to me by now,) I'm so very sorry to hear about your m-i-l. And that rain just keeps coming down... But you found your sunny side again! How DO you do that??? That's why I love to read your posts; they're so uplifting and funny, even while you're in the middle of crises. Wait, that didn't come out very well-- sounds rather selfish on my part.
Are you able to get Jesse to eat a little bit at night now? It is kind of you to keep us updated and explain what you and your family are going through. I'm sorry to know too that your family wasn't able to be together on Christmas but hope you have a good visit with dh. Please add my condolences to the others and we'll all hope and pray for improvement for Jesse. Thanks again for writing.


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RE: igloochick-- how's ds?

I guess I am a spammer too!! I had also emailed you before Christmas. Uh oh, the Christmas cookies I offered are all gone! But let me know if you want a homecooked meal. Between Barbara and I we can take care of you while you are so far from home for such a long time. Sue
.


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RE: igloochick-- how's ds?

So sorry to hear about your MIL, igloo. Hoping today is better for your DS.

Barbara, what a sweet and caring offer. GW truly does have some wonderful members.


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RE: igloochick-- how's ds?

Thank you all so much :) I was away from the computer again for a bit (DS is challenging me with his little weight issues). Good news is that both DH and I have "found" the weight he lost....wait that's not good either :oP

I am lucky enough to get a sanity break on occasion. Today I went to Little Italy to have a lovely dinner/lunch while DS napped. It's nice to escapet on occasion. I'm sure I'll do so with DH when he's here next week.

I also have to take a little leave to go hire some bad guys to kidnap a tile guy to bring back with me when I return so we can finish that danged house before we buy a third LOL (Bill what's your address darling?)

I do appreciate all the kind thoughts and offers...and Sue....Did you send your email through GW? I haven't received ANY directly through GW (a couple other folks mentioned they were or had sent me emails through GW and they have never arrived). I suppose it might be good because I'd have taken that cookie offer up LOL A home cooked meal? Darling I'd be willing to kill for one. Almost more than for a tile guy...almost.....

And I'd love to put a face on my GW friends as well. Send me a real email and we'll chat :)

But directly my email is txdawnie at aol dot com just in case. I feel bad when I miss one, but really, none of the GW ones are making it...I wonder why????


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RE: igloochick-- how's ds?

Thank you all so much :) I was away from the computer again for a bit (DS is challenging me with his little weight issues). Good news is that both DH and I have "found" the weight he lost....wait that's not good either :oP

I am lucky enough to get a sanity break on occasion. Today I went to Little Italy to have a lovely dinner/lunch while DS napped. It's nice to escapet on occasion. I'm sure I'll do so with DH when he's here next week.

I also have to take a little leave to go hire some bad guys to kidnap a tile guy to bring back with me when I return so we can finish that danged house before we buy a third LOL (Bill what's your address darling?)

I do appreciate all the kind thoughts and offers...and Sue....Did you send your email through GW? I haven't received ANY directly through GW (a couple other folks mentioned they were or had sent me emails through GW and they have never arrived). I suppose it might be good because I'd have taken that cookie offer up LOL A home cooked meal? Darling I'd be willing to kill for one. Almost more than for a tile guy...almost.....

And I'd love to put a face on my GW friends as well. Send me a real email and we'll chat :)

But directly my email is txdawnie at aol dot com just in case. I feel bad when I miss one, but really, none of the GW ones are making it...I wonder why????


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RE: igloochick-- how's ds?

Igloochic = I am usually in the background. But I do read the GW messages everyday. I haven't been to the gallery in a long time and I just discovered this. I know 2008 is
GOING to be a good year for you. I send my prayers and good thoughts for you and your family. Also, sorry about your MIL. Why do things we don't want to happen, happen in groups. I hope all good things start happening.
Lynn


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RE: igloochick-- how's ds?

Which face you wanna put on me?

Photobucket

Photobucket

Photobucket

Photobucket


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RE: igloochick-- how's ds?

:-) Bill, I think you'd LOVE Alaska - think of all the fishing you could do (in between fixing Igloochic's two (or three) homes)...


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RE: igloochick-- how's ds?

Yeah, I know. I even mentioned about it to my stepson back when Dawn first asked me. He was all ready to pack his rifles!


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RE: igloochick-- how's ds?

LOL Dag nabbit Bill I can't see photobucket pictures here in the hospital (for some reason they have that website blocked).

And I only have two houses to do in Alaska....but the new place in MN might need you as well :oP

Thank you all again for the kind thoughts and prayers. I know 2008 will be a much better year for us (if we can find a tile guy...sorry wanted to increase the guilt factor) ummm where was I? Anyhoo, so far DS is doing really well, and they're now increasing his meal size daily (we're on 3 ounces per meal now which is HUGE for him). He gained weight a couple of days in a row, and he's trying new flavors with each meal (chocolate pudding was a big hit...shocking). So the year is shaping up well. And heck, we might even finish a house or two this year!

Then I'll start on another because I love the torture of remodeling LOL


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RE: igloochick-- how's ds?

What wonderful news. DS is eating and gaining weight. You must be so relieved. Good luck in the coming weeks.


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RE: igloochick-- how's ds?

Dawn, I'm glad to hear your son is doing better.

BTW, if it's any consolation, when I'm at school, I can't see anything on Photobucket, Geocities, Tripod, or ANY free websites. It's a software firewall that schools and other institutions like hospitals use. My district says they firewall all free sites because there's no control over what's on them. It aggravated me more than once because I not only can't reach my own websites (Geocities and Tripod), I needed information on Michelangelo and that was firewalled, too! (Why??? Because the statues are nude!)

DonnaR/CA


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RE: igloochick-- how's ds?

Dawn, shoot me an email when you get a chance.


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RE: igloochick-- how's ds?

i-chic/Dawn--I'd tried emailing you, too, around the time this thread started. Sorry you didn't get it :-(

Glad to hear that DS is upping his food intake, even slightly--that's something! Glad to hear he liked the choc pudding (a kid after my own heart!). If you're up in the NYC area ever (looking for home # 4....lol!), I'll whip up a choc pudding pie w/graham cracker crumb crust for him (boxed ingredients, but it was my favorite dessert when I was a kid--yummy, maybe he'd like that!). For you, how about a bev'g of choice?

Hope 2008 is a better one for you. I just know a decent tile guy is in the cards!


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RE: igloochick-- how's ds?

Woo-hoo on the weight gain!!! Tell him to keep up the good "appetite"! So glad to hear the program is going well.


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RE: igloochick-- how's ds?

Glad DS is finding a few foods he will eat.

I have a suggestion for upping calories in puddings- fold in mascarpone cream.

I swear on my thighs it works!

Wishing your family a happy and healthy New Year!


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RE: igloochick-- how's ds?

I-Chick, good to hear that there's been some progress with DS and glad he has you. Best of wishes for the new year.
PS, Ask if they ever use EMDR for the "phobic" aspect of the eating disorder.
Karen
R.I.


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RE: igloochick-- how's ds?

IglooChic,

My thoughts are with you, your family, your in-laws, and your son during this very difficult time. It seems completely unfair for you to have to cope with so much, particularly all at once.

Dan


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RE: igloochick-- how's ds?

IglooChic,

My thoughts are with you and your family. I had no idea about your DS and now your MIL. I don't come over to the conversations side too often and just found this thread, but wanted to send you my thoughts and prayers.

Alexa

P.S. I hope you find that hospital wine store. They really hide them well!


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RE: igloochick-- how's ds?

Hi igloo - I've not been on GW as much lately but you and your DS popped into my head this morning so I came looking for you!

So, so, so, so happy about the weight gain - I can only hope that he's continued this trend the past week or so...? I am, however, very sorry to hear about your MIL - never easy for our hubbies, no matter what the circumstances are. You are one strong lady braving all of this alone - I truly hope you reach out and take some of the incredibly kind offers of the GW'ers above.

Did the house purchase in MN go through? If so, you're going to have to reveal the wonderful town that it's in....you promised :-)

I hope your time w/ DH went well - don't forget to take care of yourself (I know, I know, beyond the pop tarts from the hospital vending machines, it's hard to fit in a "treat" during these times...I recall them well). Hang in there and please remember that sometimes recovery often goes in ups and downs but it will eventually straighten out. You're in my thoughts and prayers.
- Kristin


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RE: igloochick-- how's ds?

((((Hugs)))

I just found this thread so I apologize for being late but my best wishes for you and your family are just as heartfelt. I'm so glad you found your sense of humor again because you surely use it well.

THinking of you.


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RE: igloochick-- how's ds?

Igloo_Chic (I like that name!), I hope DS is still gaining weight. With his issues, I'd have chocolate pudding (full fat version!) at every meal!

I know it's late, but I also offer my condolences on the loss of your MIL.

My prayers go out for you, your family, and your son's doctors.

Hmmm....maybe we should plan a Maryland get-together (dinner?)...if you're up to it. Other GWers in MD, what do you think?

I'd offer a home-cooked meal as well, but our kitchen is about to be torn up (tomorrow!) :-( and :-)


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RE: igloochick-- how's ds?

Buehl,
A Maryland get together would be good. I havent been able to do anything for Igloo and I feel badly about it, some minor health and work issues for me and family. ( now we are without a water heater and are waiting for a part which will be delivered ( hah) on Tues. Showering at the YMCA ain't so great!
But it would be fun to all get together. And we could cheer up Igloo. whaddya say Merliners? Sue


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RE: igloochick-- how's ds?

Igloochick,
Just email me if you want some company or just need a break. I only live about 30 minutes away and would be glad to come and visit or take you to lunch, for a walk or just sit and talk. My email is GELLIS80@aol.com. I am truly hoping the good progress continues( praying too) Gayle


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RE: igloochick-- how's ds?

Igloochick,
I just realized you haven't posted in over a month. I hope and pray things are going better for your ds.
God bless


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RE: igloochick-- how's ds?

I was just thinking the same thing. Am hoping things are going well with DS and that you had a good visit with DH.


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RE: igloochick-- how's ds?

Dawn, I hope and pray all is well with you and yours. I can only imagine what you are going through. I will lift your family up.

Just throwing this info your way... because you 'never know' why things work out like they do.... Reading about your DS made me think of how my brother's son was for about two years. Listless at times, wouldn't eat, got pickier and pickier about his food. When he was two, he was still only about 17~18 lbs. He was always 'ill' looking, pale, etc. He didn't talk early like all of the other kiddos in our family. He just was "mama's pet" baby.

He caught every sniffle and cold out there. Back and forth to the doctor with no 'diagnosis'. We all started thinking maybe it was the mother making him 'delayed'. :]

Then, my nephew passed out one morning. His parents could not wake him up at all. They called the parametics and rushed him to Nemours Children's hospital. Turned out that the little guy was diabetic! He's now four and doing great. His appetite is now normal, but he's on a very strict diet, as you can imagine. Hopefully, he'll soon get an insulin pump. It's amazing the change in him since they've finally found out what had ailed him his first two years.

Hope all is well.


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RE: igloochick-- how's ds?

Hello all! I am so cheered reading these messages and do want to appologize for the long absence. (By the way I'm going to post this twice since I have been away from two forums and have emails coming out my ears!)

DS had a turn for the worst when he caught a flu, and was isolated in a tiny box (ok it was a room but that's stretching it). A horrible little room and it made him a bit crazy with no place to play (they do that with flu and other catching disease for the kids). It sucked and we basically went into a cacoon stage, at which time the doctors decided that he had a disease that would eventually lead to leukemia and wanted to get it under controll right away...talk about a bit too much information at a bad time. All went to heck and we just hunkered down and tried to survive. That's my kind way of describing what the last few weeks has been like. It's frankly been hell and the worst we've ever been through in his many hospital stays.

We're now finally in a regular room with a lovely family from Buffalo. DS is eating 24 ounces of solid food (in what they call fork mashed form) daily and he's gaining weight. He does not have the leukemia disease (we had already booked a trip to the specialist in Cinicnnati when we were told this). So we still don't have a real diagnosis but we're going to see one of the best Ped GI specialists in IBD in the nation in the next week or so, and hopefully she can help there.

Aside from those little bumps...we're ok. Frankly I've reached a state of "tired" that is beyond compare...and I still can't find the hospital wine bar...but I did find Bin 604 recently and can recommend them to anyone LOL (It's a wonderful little wine shop with tastings...you'll know it's me if you see a red head gulping down tastes one evening). Since DS can now be in the play room I get a break on rare occasions and go to little italy and take in a quick dinner and did get to go to a tasting. How fun it is to be "normal" just one day a week!

I'll post more later, but must get DS to bed before I fall over. Thanks all for your thoughts, suggestions and help. (We did rule out diabetis but that was a consideration at one time). Marscapone cream....not a bad idea...does it have milk? (We can't do heavy milk....)

Anyhoo, we're counting the days we have left...9 after tonight. And then we're off to Du...umm Minnesota to look at the house :oP then on to home in Alaska! I can't wait to post more pictures of the house! We've learned so much about it's silver sink, art deco tiles and silver chandelier....it is so fabulous!!! Anyhoo, off to bed! Thanks all and I'll be back!!!!


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RE: igloochick-- how's ds?

I-chic (Dawn!)--(((HUGS))) for you and DS (and some for your DH up in Alaska, too!). We're all keeping you guys in our thoughts.


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RE: igloochick-- how's ds?

Glad to hear you are both doing all right. Get some rest and take good care of both of you.


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RE: igloochick-- how's ds?

More hugs for you, DS and DH. Hope you can get some answers and solutions.


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RE: igloochick-- how's ds?

Many thanks for checking in! You're in our thoughts and prayers.

- Yvonne.


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RE: igloochick-- how's ds?

Good to hear from you I-chic. If DS is as resilient as you seem to be, he's sure to do well.


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RE: igloochick-- how's ds?

Dawn, may God Bless you and watch over you and your family.

What we won't go thru for our kids. :-)


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RE: igloochick-- how's ds?

Since my kitchen remodeling has been finished for quite a while I've neglected this site. But for some reason today you popped into my mind and I came here to see if you had checked in.

Good grief you have been through so much these last few months. It'll make finishing your houses (1,2 and 3) seem so simple after all of this. By now you must have left the hospital and I hope you're enjoying your Minn home. You and your family and dear son will be in my prayers.

As my Navy nephew signs off in his letters - May you have
fair winds and following seas on your journey.


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RE: igloochick-- how's ds?

Thanks again all :) We're home (or whatever we call hoome since our home is in pieces LOL). Ok we're at the rental but we're darned close to home and I haven't seen a nurse for a week, which is great :)

DS isn't doing well. He got very very sick at the end and is still trying to recover all he gained at the hospital (both eating and weight). But, he's so happy to be with his toys and things :) He just runs around turning things on and touching things, chasing cats, chasing moose...the ususal stuff, and smiling. We'll get the food back in and the weight on and go from there.

It looks like we may be off for the next specialist in a couple of months, (Immunologist) but for now we'll rest, and finish home number one, so I can buy home number three heh heh

We did get to visit our hopefull future home in MN. I'll be sure to post pics, but since our first stated interest she's decided to raise the price half a million bucks over appraised value, which we won't pay, so we'll see. I may just have two kitchens to finish instead of four. That can't be all bad!


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RE: igloochick-- how's ds?

The fates just won't give you a break, will they?
He got sick again? But hopefully he'll start eating again soon.

But at least you're back home and have a great attitude.

I'm assuming that since you're off to another specialist that you're still in SWAN-land? Hopefully, just one step closer...


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RE: igloochick-- how's ds?

Are you sure you want to live in MN? ;) We've had SO much cold this winter. It'll warm up to about 20F for maybe a day or two then a couple more weeks of up to -50F with windchills. Some areas had a LOT of snow this winter. But we had only 2-3 feet in December and nothing really since then. But this cold is nearly unbearable. January was gray skies all month and into the first part of February. We've had some sun lately, thank goodness. It makes the brutal cold more tolerable.


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RE: igloochick-- how's ds?

keeping my fingers crossed for your 3 and 4th kitchen - living vicariously here! It would be so sad if you only had 2! :) Glad your DS was ok to travel home, I know you are glad to be home. so many knobs and so little time.... Sue


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RE: igloochick-- how's ds?

SWAN it is,although we met with one of the top ped gastro docs in the nation and she thinks she's pinned it down to Hypogammaglobulinaemia (is that name short enough?) Basically an immunoglobulin disorder (he's always been low IgA). We'll see in a couple of months. So until then I will just live with my ugly two year old ducklin...ummm Swan :oP He's a keeper on occasion.

Today I'm getting used to our new routine. TO get him back to baseline I had to go back to hospital foods so I'm basically "cooking" with a fork and a microwave. Everything is seasoned with fake butter (soy) maple syrup and honey. Everything comes from a can...and many are made by a guy named Boyardee who (in my opinion) does NOT deserve his chef title.

df it sounds like you're describing Alaska :oP It's not much of a stretch to go from here to Duluth. ALthough when we left it was -8 in Duluth and by the time we got home that night it was +30 degrees in Anchorage. But this is the real reason we don't care...who cares about the weather when you can live in this...

Duluth Home

Thanks Sue :) Fortunately my little trooper is tough as nails! I got that flu too and must say that I couldn't have traveled like that if my life depended on it! You Marylanders pack a whopping in your bugs!


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RE: igloochick-- how's ds?

Dawn,
That's because our germs aren't frozen somewhere out in the tundra.
The "Chef" was a favorite with my kids for a good while, kids are not usually little gourmands. I will never forget when my son who was 3ish and had severe speech delay, said "you cook good food" it was frozen chicken nuggets and french fries! bleecch1 He also insisted that I call my Mom to get her peanut butter and butter sandwich recipe cause hers was more better, and yes she gave it to me LOL.
I am betting your little guy will quickly get back into the routine he learned in the hospital. I am convinced that is the dance of life, one step forward, two steps back, it is what makes the good in our lives all the sweeter and worthwhile. Wish it were easy.
I would have liked to have met young Master J when you were in MD. Next time he can meet Cooper and Bailey and give them treats and boss them around. Those big gentle dogs would adore him. Sue


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RE: igloochick-- how's ds?

Riding in to work with DS this morning, I commented how nice and warm it was for a change. He replied that it is pretty pathetic when we think 12F is WARM! LOL


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RE: igloochick-- how's ds?

The house is beautiful, I can just imagine all the light that must come in through those huge windows. Hopefully your son will quickly regain the weight and then you can resume your remodeling. Wishing you all the luck there is with your projects.


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