Alex is Home!!

[Lura]

HI everyone!

Just a short note, as I am exhausted! Alex's surgery was on Monday, March 27, and we are home already. Fourteen vertebrae fused, and Alex was amazing! Nikki said he would be my superman, and he was!

More later!

Lura

[nikyergen]

Lura,
I am so glad you and Alex are home. I knew he would do well. He had to because he has a pretty terriffic mom. You will still be tired for a while. It's almost like taking care of a baby again, but it is short term.

Crystal is doing really well. She is going back to school Monday. One day shy of being three weeks post-op. I can't believe it. She is on very little pain medication. She says her back doesn't hurt all the time, like it did before surgery. The pain she has now is from the incision. She complains now that her incision itches.

I am so thrilled that Alex was your superman. The kids are so strong, it is incredible what they are capable of going through. It is so nice to have you on the other side now.

I have looked continuously this week for a thread from you. I was thrilled when I saw it tonight. What did you think about the care Alex got a Shriners? I can't imagine taking my child any where else for this type of surgery.

Welcome Home. I will continue to keep you in my prayers. And, yes, I would like to exchange addresses with you. I'll e-mail mine to you when I get a minute.

Love and prayers,

'til Later,
Nikki

[phaden]

Congratulations. So happy for you and Alex, and of course, for those of us anticipating our child's surgery every success story helps to ease the anxiety a little. Thanks for taking the time to post when you must be very busy.

Give Alex very best wishes from Hobbit-land.

[lorrie]

Hi Lura

I am so happy that everything went so well for you two - though I'm sure exhausted is an understatement!
Big hugs to you and gentle ones for Alex.
Luv
Lorrie

[susannajon]

Hi Lura,

Just checking to see how you're doing now that you're home. Sometimes it's tough being away from the doctors and nurses and on your own. I hope you're coping well and your little man is hanging in there. Drop us a note if you get a chance!

[Lura]

Hello Girls!

I have never been so tired in my whole life!!! Stress and lack of sleep will do that to you! Alex amazes me more every day. Today he seems to be bothered by the incision, needs pain meds every 5-6 hours, isn't sleeping enough for me to get a good nap, but it returning to his sweet self very rapidly!

As for Shriners, it started out rough, we sat in Alex's room for 2 hours before I threw a fit and questioned why no one had been in to put him at ease (or me for that matter). Following my breakdown, everyone was extreemly gracious. The doctor was a pompous ass the morning of surgery when I had questions, and I told him I wouldn't be a good mom if I didn't research and ask questions. The days past surgery I feel he developed a respect for me, and I saw him in a different light as well. The nurses were the best I have ever experienced, and Alex's surgery was amazing (10 degree curves at present)! They had Alex up and moving on Tuesday, and he just moved more every day! By Friday, all tubes were gone and we were chomping at the bit to head home! The ride home was harry for the first half hour with him trying to get comfortable, then he slept the remaining 4 hours.

To any mom's still waiting for surgery, it truly isn't as bad as you are expecting, and trust me, I was expecting the very worst.

Well, it's time for me to give Alex some meds and hopefully sleep for a few hours. For anyone who wants it, my e-mail is llcass@in-tch.com. Thank you all for the prayers and good wishes, they helped!

More soon!

Lura

[susannajon]

I totally understand. Three weeks post-op my little one is still waking up every 4-5 hours for pain meds. I can tell you, I felt like a new mom with a nursing baby, and it sure convinced me I am WAY too old for another baby. She is getting a little better every day. I just gave her meds, so off to bed for me too. Up again at 6:00 AM, phew!

Susanna

[nikyergen]

Lura,
Good to hear from you again. I am glad you got assertive with people. Sometimes you need to do that. I think it must of been much harder when you didn't get to see the doctor until the morning of surgery. We met with him the afternoon before surgery and had all evening and a few hours the next morning to cogitate about what was said.

Sometimes they forget we are moms and the only reason we are in those situations is because our children need the very best care possible.

It sounds like your trip home was much like ours. Took a little while to find that comfortable spot, then the rest was breeze, or should I say a "SNOOZE".

Isn't it incredible about all the worrying we did before surgery, and them BAM its done and we wondered what we were all worked up about. I felt the same way.

You get some much needed rest. Take some advice another mom on the boards gave me. Don't worry about the laundry, dishes, etc. They will get done when you get them done. You need your rest while Alex is resting. I know we feel like the laundry is going to grow legs and attack us, but it won't. I promise. If there is anything wet, it might get a little smelly, but it won't sprout legs. Maybe it should, that might be easier yet. lol!

Again, glad you guys are home and settling in. He'll be driving you nuts again before you know it. I am so glad Crystal is going to school tomorrow. It's been too long to have her home. She was home for three weeks before surgery because her whole school was sick and I didn't want her sick. She's going nuts and wants to get back to school.

Love and prayers to you, Alex, and the rest of your supportive family.

'til later,
Nikki

[Carmell]

Lura - I'm glad to hear Alex is home and recovering there. It sounds like he was the ideal patient in the hospital. Good for him and you! Needing pain meds every 5-6 hours is not unusual. Keep giving it to him whether he needs it or not for a few more days. It's easier to keep on top of the pain, than let it get bad and then try to control it.

Keep up the great work. You will be just fine. Alex will too. Keep us posted.

[lorrie]

Hi Lura
Gald things went so well in the hospital (even if it did take your throwing a wobbler at them) - I knew you'ld turn out to be a top grade tea-bag!1
Nikki's right - forget the housework. If anyone complains - give them a job to do. Right now all you have to do (all?!) is look after the two of you.
Love
Lorrie

[SarahH]

I am SO very happy that all went well and that you guys are home! I have been waiting to see an update like this!!! Many hugs to you and Alex!

[nikyergen]

Lura,
How's your superman (Alex) doing? Good I hope. Crystal is finding school is kind of wearing her out.

Just thought I'd check on you guys.

Still sending lots of prayers your way.

'til later,
Nikki

[Lura]

Lorrie, Sarah, and Nikki,

I love getting on this site and seeing notes from all of you!

I have been a single mom to Alex since he was 8 months old, so I am here to tell you, if I need to get tough, I do (granted there are usually tears involved, mine)! I think I've said it before, but I have fought for 5 years to keep Alex fully included in classrooms with his non-disabled peers, and to date I have been successful every year! So thanks for calling me a top grade tea bag, Lorrie!

Sarah, I've tried to imagine how Trenton is doing since he and Alex are close in age and had surgery close together. I am also curious about Nicole. Alex is doing so well. He is refusing the pain meds. which is freaking me out, but he will take reg. children's tylenol, so I guess he knows best. We are experiencing some tummy trouble and his appetite still isn't great, but he is moving around and remains his happy, silly self, so I am not panicking.

Nikki, we are all referring to Alex as "superman" now! My dad was in Spokane with me and when they brought Alex down from recovery, he was doing rather well and my dad tearred up and said "that kid is my hero", this brought me to tears as well. I have to say I have one tough kid! I hope Crystal isn't trying full days, I don't think they realize what surgery takes out of you. I'm hoping to get Alex doing half days by May 01.

My very best to all of you as well as Trenton, Crystal, and Genevieve and your families!

Lura

[nikyergen]

Lura,
I am so glad to hear from you. I am glad Alex is doing so well. These kids are all superheros.

Crystal did 5 out of 7 classes Monday and is still pretty tired today.

Can you do me a favor and make a post on the Surgery site - Please Post Your Shriners Experience. I think there are people out there that would like to know and there are so many Shriners hospitals, it would be nice to see if there is consistency in care from Shriner hospital to Shriner hospital. Do this only if you have time, I know how exhausted you are and this isn't that important.

I think it is so incredible how these kids all get through their surgeries. They are all so strong and getting past some major hurdles. I also think all of you moms that deal with other disabilities and go through this with your kids are supermoms. You all step up to the plate and become the best advocate your child has. You ladies are all wonderful and are doing a great job.

Our prayers to out to all of you and your children and families.

'til later,
Nikki

[lorrie]

Hi Lura
I can't believe how fast your Alex is coming on - he's a real tough little cookie, isn't he! I would reckon as long as he's happy he can't be having too much pain. The only trouble with children's meds is the volume they have to take as they get older to get a decent dose. We only last year (at age 16) manage to wean Genevieve off paediatric Calpol. You have to take about a gallon to get an adult dose. We now grind up regular tablets as needed and hide them in jam. I knew that mortar and pestle I never did grind spices in would come in handy one day.
She broke her arm last year and school was quite surprised when she came back complete with the mortar & pestle and a jar of raspberry jam!

Nikki
Crystal sounds to be doing just brilliantly - I'm amazed she's back at school already. Really happy for you all.

Lorrie

[nicoles mom]

Hey Lura
So Glad Every Thing Went Well With Alex.
Nicole Is Doing Well Too.
I'm Still Wiped Out I Think If I Could Get About 8 Hrs Of Sleep I Will Be Fine. So I Just Wanted To Say Hi Glad All Is Well And Go Get So Sleep Talk To You Soon.
Theresa

[nikyergen]

Lura,
How is Alex, your superman, doing? I read that he were concerned that he was listing to one side when he walked. Crystal was doing the same thing after surgery. While in the hospital, I was walking behind her with a wheel chair in case she couldn't get back to her room. The PT was walking along beside me. I asked him about her list. He told me that was normal with spine patients. He said they find a comfortable spot to be upright to walk and it would go away after a short time. He was right. Crystal now walks upright, with not list. My worries are over on that one. I was afraid we had traded one problem for another problem.

Let us know how Alex is. We are praying for you guys.

'til later,
Nikki

[Lura]

Hi Nikki!

We are on at the same time tonight! Thanks for the information on the listing, I called Shriner's yesterday just to ask, and our care coordinator told me basically the same thing you said but because she dropped the ball during our Shriners surgery experience, I was questioning her reply! Alex actually seems to be less crooked today, and his personality is pretty close to normal as well. What a wild ride!! I am amazed by the way Alex has adjusted to his limited flexibility, he just seems to take it in stride! AMAZING!! I truly believe in the power of prayer, and there were many people praying for him.

I keep reading the threads daily, alot I cannot identify with, so I just read and don't post. It's somewhat odd, but if I don't have anything to offer, it's just as well I don't add my two cents!! You are a wealth of information, and this site is blessed to have you!

Great hearing from you!

Lura

[nikyergen]

Lura,
I just know how worried I was about Crystal's list. When I saw your question about Alex's list, I wanted you to know my experience with it. I was so thankful for Carolyn when I came on this board, it was a big relief for me to have her to lean on. I feel it is just something I need to do for others too.

Crystal is still in her brace and will be for about another 4-8 weeks. She is really hoping the doctor will let her take the brace off next week. I, on the other hand, want her kept slowed down for a while longer. She goes in to see her surgeon on the 20th. We will leave the night of the 19th and come right after appointments on the 20th. All three of my girls have appointments with their doctor on the 20th. What a day. But, I'd rather have it all at once than one each week.

I can understand your not being able to identify with a lot of the threads. You had a lot more going on with Alex's health. I get really frustrated with a mom on another forum I am part of. Her son has lots of health problems, had his first spine fusion before his first birthday, and has numerous surgeries since, and she always gives new mom's the doom and gloom. I just try to reassure them that each child is different, some have other health issues, some don't. Each surgery is different and how each child recovers is different.

I am so glad that I got to meet you over this forum. It is hard to believe we live so close, but yet so far.

Well, I need to get. My kids are getting on my nerves and they need to go to bed.

'til later,
Nikki

[Nicky's Mom]

Nikki,
I was very dissapointed when I read your post, as I was under the impression that we are all on these forums to help each other! The "doom and gloom" person that you were referring to, has helped me immensely, in finding the right treatment for my son. She has a vast knowledge of scoliosis, and it's treatment, and has helped alot of others who are dealing with this issue. I have been reading her posts(on this, and at least 3 other forums) for quite some time, and have never found her posts to be negative, or doom and gloom. Instead, they have always made me want to learn more! I believe that knowledge is the key, to finding the right treatment for our kids. Having a positive attitude about things is so important, but we also have to keep in mind, that there are a great many difficulties to overcome, as well. It is very true that each child is different, and has different issues to deal with, and "she" mentions this all the time. I find it very unfortunate that you would "publicly" point a finger, at someone who has helped so many others. Perhaps, in the future, you could use a private message, if you wish to make negative comments about someone who is(like most of us), only trying to help!
Cathy
Mom to Nicky, a happy, healthy 3 year old, who was diagnosed with a 48* curve, at 8 months of age.

[nikyergen]

Cathy,
I guess that makes me highly disappointed in you for your assumption and your implications that you made to me. I think you jumped to conclusions when that was wrong on your part. You don't have your facts, do you. This was on a completely different forum. Not this one. So, I am not sure what you are talking about. I was very clear to state that it was on a completely different forum. So, before you try to shame me, maybe you need to reread my post. I stated in it it was on another forum. Do you know all the forums I belong to. No you don't. So, please don't accuse me of saying something about someone on this forum. So, maybe next time you shouldn't point the PUBLIC FINGER until you get your facts straight. It was not from this forum I was talking about. There is more than this forum out there. And, there is more than scoliosis.org and spinekids.com out there too.

I won't apologize to you for my comments, because I was not referring to anyone on these forums. I do apologize for you misreading my post. Maybe try reading it again. The forum I was referring to I don't even visit often because of the doom and gloom person, and there is not enough information that comes off of that forum.
Nikki

[lorrie]

Hi Lura
Delighted to hear that Alex is still making such progress and walking straighter and, Nikki, it's so good to hear that Crystal is doing so well. I think this forum is about the only thing keeping me sane at the moment while we wait for a date.
I phoned the hospital last week and Genevieve is now top of the list and they're just waiting for the consultant to give them a date. Meantime, every time the post arrives my stomach turns over, I can't concentrate and my colleagues at work must think I've left my brain on the breakfast table. Actually it's just ceased to function - I feel like I'm thinking through cotton wool.
I actually ran away for a night on Monday and went with a friend to stay with my brother. I didn't want to go but my very good friend got very bossy and said it would be good for me as i needed a break before G goes into hospital. She was right but now that I'm back it's hard to remember I was away.
OK. Deep breath and end of moan. It's time to put Genevieve to bed (she does not agree) so I better go and do my supermom impression.
Thanks for listening, you two. Sorry to beso down.

Lorrie

[Nicky's Mom]

Nikki,
I was not looking for, or expecting an apology from you. I did read your post thoroughly, and knew that you were not necessarily talking about this forum. If you read my post, you would know that I am on quite a few other forums, as well. Many of us are. Anyone who is on any of these forums regularly, would know from your description, who you were talking about. I just don't think that it is in very good taste, to be making negative comments about anyone, on any of the forums. We are supposed to be on here to support, help, and encourage each other!

[nikyergen]

Cathy,
Please read your private messages. I have sent on to you.
Nikki

[nikyergen]

Lorrie,
So glad to hear Genevieve is at the top of the list. It was good for you to get away from the stress for a little while. It won't be long and you will be on the other side of surgery. Isn't it great Alex is doing so well. You ladies are wonderful moms. I know you have way more going on with you kids than I do, and you handle these things all so well. Keep up the great work. Keep us posted on Genevieve's Surgery.

'til later,
Nikki

PS-You weren't being down, you were being normal. Have a great day.

[Lura]

Oh my God, Nikki!!!

Do you feel like you've been thoroghly scolded?? Unjustly so in my opinion!!

Cathy,

You really need to chill out!! I have a Down syndrome son who just underwent scoliosis surgery, and Nikki has been my ROCK! She is inspirational, informative, and very caring. What she was doing in the "heinous" thread, was complimenting me as a parent, she wasn't being cruel to whoever the other woman was, she was simply stating that my attitude was "up" when it could have been "doom and gloom". Thank you so much for taking that pat on the back away from me. Perhaps it's you who needs to private message your personal attacks!

Lura

[Lura]

Lorrie,

Mine turn to send you a virtual hug.......did ya get it? Please feel free to have as many pity parties as you wish, we will listen and give you the pat on the back you need!!! At least we can identify, as we have been in exactly the same place. Genevieve is a lucky girl and you are an awesome mom, with that team, how can anything go wrong? You are in my thoughts and prayers, and Alex, Crystal, Nikki, and Trenton and all the rest are proof that prayer works!
Whatever you do, try to keep rested, this side is equally if not more exhausting!
We are here for you!!!!

Lura

[Nicky's Mom]

Lura,
I give Nikki all the credit in the world, for being your rock when you were going through a difficult time. That is what we are all here for. The point I am trying to make, is that the person that Nikki was putting down, is my rock, and an inspiration to many. Just because that persons advice doesn't help everyone, that is no reason to put her down in such a public way. Heinous is your word, not mine. I'm glad that Nikki was there for you, and you deserve to be complimented on being such a wonderful parent, just not at someone else's expense.
Cathy

[nikyergen]

Cathy,
Back off. You aren't reading your facts. I have had enough of your garbage. Go air your dirty laundry somewhere else. You are wasting time trying to defend something and I don't know what. You have a lot of issues with your son that you need to concentrate on. And, I suggest you do that. I am sure you are a wonderful mom. But don't get so hung up on something you are wrong on. The person you think I have referred to is someone I have talked to so now what. You need to end this now. We have other things to do here than this kind of garbage.

[Jacque's Mom]

How about you use the "private messages" to settle your differences. People come to this site for help, and to see this type of back and forth arguing is quite disturbing.

[nicoles mom]

:eek: :eek: :eek: :eek: :eek: :eek: :eek:

[Lura]

Hey girls,

Every now and then a little rain must fall!!! (Sometimes a bit of a gully washer)

I love you all and am so greatful for the support!!!

Keep up the good work!!!!

Taking it easy in Montana!!! Carry On!

Lura

[nikyergen]

Lura,
How's Alex today? How is he handling his pain? Did the doctor put him in a brace? Crystal is doing very well. But, she is very tired of her brace and can't hardly bare the thought of wearing it for another 3-7 weeks. She has her first post-op on Wednesday of next week.

I was in our local e-room for the last 20 hours. My husband had a kidney stone and it took them forever to make a decision. Finally made a decision and were able to take it out. I've had enough hospitals for now. I've had someone in the e-room for 4 out of the last 5 days. Not my idea of a good time. Hopefully we are done with it.

Well, I need to get some shut eye. I have been up for the last 40 hours and am pretty tired. Going to bed shortly.

'til later,
Nikki

[Lura]

Good Morning Nikki!

I am hoping you got a good nights sleep! No brace for Alex, he is still slightly crooked (it's kindof freaking me out), all of the steri strips have fallen off, now just an ugly scar (roughly 18 in.). No pain meds, which I am greatful for, however, his nights are rather restless, so no solid night sleep yet! I am definately not complaining, mind you, I have been very lucky so far. Our post op is May 18, and I must say I look forward to going and hearing that all is okay!
Just keep telling Crystal she's on the down side of all of this, so the brace is like the final step!! She sounds absolutely delightful! There are no girls in our family, my brother, sister, and I all have boys!

well off to work!!

Lura

[Celia]

I must be out of my mind to get involved in this discussion. However, in defense of the "unknown" mom who warns of doom and gloom, it's pretty much an accurate description of what many of these children with progressive or congenital infantile scoliosis are faced with.

Parents to children with adolescent scoliosis have so much less to deal with. Even though many adolescent children face VERY invasive surgeries, the vast majority recover with no ill effects and continue to lead normal lives. Young children ( i.e., infants ) face a very bleak future of endless surgeries to keep up with spinal growth or else undergo a fusion surgery and end up with a visible deformity with cardio and pulmonary compromise later in life. Many such children succumb to an early death due to pulmonary complications. Which ever way you look at it, it's not a pretty picture.

God only knows that every single mom on this thread has had more than their fair share to deal with. It's so difficult dealing with a special needs child. Even though my daughter has been in casts for three years to help keep her spine upright and ensure that her heart and lungs continue to thrive, I would never switch places with Lura, Nikki or Cathy. I'm sure each and every one of you feels the same way and are thankful for the children that God has blessed you with.

I think so many of us are stressed to the max that its a wonder that we can still function. Look at us, helping one another - offering a shoulder to lean on. It truly is a miracle - the power of the human spirit - to endure so much and STILL have something to offer. :)



Celia

[nikyergen]

Lura,
I did get some sleep last night. Woke up at 6am to discover my telephone ringing and my husband had gotten up and answered it. He had apparently been up for quite a while. I didn't get up until about 7:30am.

I have a bunch of transcription that I was supposed to do yesterday and today, but was at the hospital all day yesterday and had to get caught up at the ranch today. So, now I am going to work on it until late tonight and all day tomorrow.

How's SUPERMAN? Is his list getting better? Crystal's is completely gone. These kids are all so incredible. I am sure glad God has blessed us all with the wonderful children we have. Each and everyone of them is incredible, no matter what they have going on.

Give SUPERMAN a huge hug for me.

Love and prayers.

'til later,
Nikki

[Lura]

Celia,

Thank you for the kind words! You are so accurate about the stress each of us on this site endure. Any woman, or man, who has a child that requires surgery of any kind will always feel anxiety and stress. Having a child with special needs just adds another element. I would never claim to have more anxiety than any other parent just because Alex has Down syndrome. The common factor is the same for all of us, these are our children and they are about to go through major surgical procedures, and that scares the hell out of the toughest parent. This is truly of wonderful site, and I know it has helped me immensely and continues to do so.

Best regards!

Lura

[Lura]

Hi Nikki,

I worry about the amount of sleep you get!!! I hope it's more than I am suspecting.
Superman continues to amaze his mother! Today I did notice a small are of redness at the base of his incision with a bit of puss coming out, should I be worried? It's not bad, but I have fretted over it all day. The very top of the incision has always been just a tad red and scabbed, and there is a very small scab in the middle. Actually it is rather amazing that I am able to tell you this since every time I tell him I need to look at his back he gets really mad and it takes a great deal of convincing before he gives me a few seconds to view the incision.
I feel like a bad mom because every time someone comes to visit he stands up and lifts his shirt so they can see his "boo hoo", I have only asked him to show it to a select few people, and now he automatically thinks this is the protocol. I will be working on remedying (sp) this situation before he has exposed himself to the whole town!!
I am so encouraged by Crystal's progress! Yours sounds like a wonderful family. Don't forget to take care of you!!

Good night!

Lura

[lorrie]

Lura
YOU ARE NOT A BAD MOM!!!!!! Best enjoy Alex doing what you ask him - even when you don't ask him - while it lasts: he'll soon be a stroppy teenager and all you'll have is memories of your nice cooperative child!! (lol).

If I were you I'd get someone to look at the pussy bit of the incision. I'm a bit paranoid though as Genevieve did have a nasty infection in one of her incisions after she broke her arm last year (they put pins in rather than putting her in plaster and one of them managed to rub its way through. Very scary).
People kept telling me everything was fine and it really wasn't.

I don't know how these things work in the US but here I'd either get my Gp or maybe the practice nurse to take a look. Doesn't matter if they think you're a fusspot - better safe than sorry.

Hugs etc
Lorrie

[susannajon]

Lura,

I'd get your family doc to take a peek at his incision. As Lorrie said, better to be safe than sorry. He'll probably just have you dab it with some peroxide, but you will sleep better if you have him looked at.

Hugs to YOU Supermom,

Susanna

[nikyergen]

Lura,
Crystal has some pussy stuff coming out of her incision. I called her doctors nurse and she had me take her in to have it looked at. The doctor in the ER, not her ortho.surgeon, said it would probably be okay. But, since she had bronchitis, he was going to put her on an antibiotic that would take care of both problems. Call the doctor's nurse. She will help you decide what to do. Dr. Krajbich's nurse was wonderful help over the phone. Call them tonight, there are nurses on duty 24/7 at Shriners to help you out. Look for the number in your discharge papers.

Let me know how things are going.

Yes, I am getting some sleep. I took an incredibly long nap yesterday and couldn't sleep last night. That, combined with Crystal going to the prom and worrying about her, kind of took that urge to sleep away until she got home. She had a great time. She looked absolutely stunning.

Glad to hear Superman is doing so wonderful and that he amazes his mother. She is pretty wonderful herself. Let me know what you find out from the hospital about Alex's back.

God Bless You.
'til later,
Nikki

[Lura]

Hi girls,

I have an appointment with Alex's GP today at 3:45 to look at his incision. I thought it was looking better, but my parents have me convinced the doc should take a peek. Better safe than sorry as they say!

How is everyone doing? Nicole's pain? Trenton? Crystal, did prom wear her out? Any date for Genevieve's surgery? I haven't gotten on line for a day or so, and I feel lost!!

Well off to the post office, grocery store, then to work for a bit!! I'll let you know about the doc visit!!

Later Girls!

Lura

[nikyergen]

Lura,
I agree with your folks, better safe than sorry.

Crystal had a great time at prom. She was absolutely stunning.

Crystal had her first post-op yesterday. Everything is healing wonderfully. The doctor is surprised she is doing so well. But, she is a very motivated child. He says she only has to wear her brace in the car, at school, and when she is around a lot of people, just to protect her from being bumped. She goes back the middle of June for her next appointment. He didn't release her to do anything yet.

Let us know how Alex's appointment went.

'til later,
Nikki

[lorrie]

Hi Lura
Hope the doc's appointment went OK and there's no bigproblem with Alex's back. Don't feel lost we're all still here (although I'm working on my husband's work lap top as our own computer has died - need a new hard drive) so I can't get on so easily at the moment.
Still no date - I rang the hospital again today.AAAAAAAAARGH!

Nikki,
Glad Crystal's post opwent so well - and her prom - she's quite a girl, I reckon!
Love to all
Lorrie

[Lura]

Hi girls!

The doctor said to just keep an eye on Alex's incision since it isn't radiating heat, not as red, etc. I am freakishly fearful of his back at the moment. Alex wanted something in the back seat the other day and began twisting to get it, I didn't know what to do as I couldn't pull on him, so I yelled and he got mad and kicked me, then I wanted to swat him on the butt, but feared I would jar his back........Any way the little imp is getting away with a lot more than he should because his mom is terrified!! And trust me, he is enjoying every minute of it.
Nikki, I am glad Crystal's post op went well, I can't wait for Alex's just to be sure he is really doing okay.
Lorrie, the waiting must be unbearable! I pray you get a date soon!

More later!

Lura

[nikyergen]

Lura,
I know some of you feeling about these little imps. Crystal would deliberately drop something and then look at me as if to say "GET THAT PLEASE." Oh, what a poop.

Glad to hear Alex's incision is okay. Keep a close eye on it.

Well, we had an FFA banquet tonight, so am kind of sleepy. Talk more later.

Love and prayers.
'til later,
Nikki

[nicoles mom]

Hey Lura
Glad To Hear Alex Incison Is Good. Nicoles Is Looking So Good All The Strips Are Off As Of Yesterday. Last Night Was A Night We Will Not Forget Any Time Soon. Nicole Was Stuffed Up Trying To Blow Her Nose Crying About Being Stuffed Up Up Til 4:00 Am. She Finally Just Passed Out Me Too. Woke Up This Afternoon Fine So Hopefully Tonight Will Be Better. Nicole Is Also Getting Away With A Lot And Getting The Best Of Me Last Night I Told Her I Was Going To Put A Pillow On Her Face If She Didn't Clam Down. Yes I'm Losing It Her Dad Came Downstairs Thank God And Saved Me From Killing My Nicole {the One Who Makes My Heart Shine}. Nicoles Girlfriend Came Over Last Night And She Bend Down And Picked The Dog Up She Said It Hurt. So I Know What You Mean They Told Her Not To Bend Over Or Turn Her Head She Has To Turn Her Whole Body With Her Feet. Maybe A Large Bubble To Keep Her Back Safe. So Now We Worry About This Till The Doctors Appointment. We Were Going To Get Her Brace This Week Now I'm Going May 2 To Pick It Up. My Doctor Is Going Away For A Month To Help Kids In Ghana So Hes Been Busy He Spoke To Me On Friday And Made Me Feel Ok About Her Not Having The Brace Yet. Her Ribs Are Feeling Better So I Guess I Wont Feel So Bad Putting The Brace On She We Her Another Week To Heal.
Theresa

[Lura]

Theresa,

I am soooooo glad Nicole is finally feeling better!! Isn't it nice when those steri strips fall off?! Alex is a complete "shit" since he is feeling better, and sadly it is okay with me, I am so relieved he has handled everything so well! Tonight he was standing on his bed, ready to jump up and land on his butt, it totally freaked me out!! I am going to be very old when all of this is over. I am a 37 year old mom and I feel 57!! The only problem Alex seems to have at this point is when I get him going too early in the morning, he tries passing out! He isn't a good breakfast eater, so I think it has to do with an empty stomach and pushing him too fast first thing. Scott thinks it's due to the blood he lost in surgery and his body is still trying to resupply itself? I don't know, but it drives me crazy!
Any way, can you believe we are both just almost 4 weeks post op? Thanks for posting, Theresa! Give Nicole a hug!

Lura

[Risa]

Hello Lura,
Just wanted to say Hi! I'm glad Alex is doing fine, gives me hope for Marisa when her surgery comes up. You mothers on this site are great you have given me so much peace reading these posts. Marisa's surgery is coming up May 18th. I will keep in touch with all of you. I'm amazed that I have not been able to find a child with the same hanicapps as Marisa. She is totally dependent on me for all her care. Really can't explain surgery to her at all. Well maybe I will be able to help somebody at a later date.

God Bless Risa

[lorrie]

Hi Lura
Not been on for a day or two - still no home computer. I really miss not being able to come on whenever I want to. However, Jan is installing the new disk as I type though so should be up and running again in a day or two. Meanwhile, as he can't do two things at once, I've kidnapped his lap top.
Glad to hear Alex's incision is OK. They just do these things to make sure we're paying attention. Like Christopher Robin said "Now, what can I do to amuse them today?" after he'd had wheezles and sneezles and possible meezles. The passing out must be scary though - have you asked anyone about that? Would he go for a picnic in bed before he gets up, maybe? If he thinks it's a game instead of breakfast maybe he'll eat.

Hi Theresa,
Glad nicole is feling better. It's always a good sign when they start feeling well enough to be a complete pain! Even if you sometimes think it's a question of who kilss who first!

Hi Risa
I'll be thinking of you come May 18th. I do know what it's like to have a child who is totally dependent although Genevieve does have some understanding of what's going to happen to her. Megan's Mom is in the same sort of boat as well. I wish we could be some help to you but I guess all we can do is keep praying for you . We will do that.

Love to all
Lorrie

[Lura]

Risa,

Welcome aboard! Tell me about Marisa's developmental issues. If you've read through these, you know Alex has Down syndrome. There was no explaining the surgery to him either. People said maybe it's better he has no idea and I didn't agree before the surgery, but now I think there is some truth to it. Alex has done remarkably well, very little pain meds the first few days, and he has adapted to his new limitations miraculously! I am amazed daily! If you are anything like me, the worry before surgery was far worse than the actual surgery! It should all be fine!!

Lura

[nikyergen]

Lura,
I winced when you said Alex was on the bed about to bounce on it in a sitting position. You won't believe this one. I went to pick my girls up from school today. Here came my 16 year old Crystal, galloping down the hall to me. Talk about put my heart in my throat. I asked her to please slow down. Her history teacher caught her shooting baskets yesterday and told her she wasn't released by the doctor yet to do that. At least I know the teachers are watching her. She told me about it and said "The ball only weighs 7.6 pounds and the doctor said nothing over 10 pounds." Now, how do I answer that one. At least she had her brace on. I am so glad all of the kids seem to be feeling better.

Love and prayers.

'til later,
Nikki

[Carmell]

Oh Nikki,

How bad is she trying to "bend" the rules (no pun intended)??? It's one thing to PICK UP a basketball, but the jumping and twisting to SHOOT the thing is more damaging that anything. Silly kid! Good thing she had her brace on. I'm glad she's feeling well, but she's got to be careful not to do anything to disrupt that fusion process. She does NOT want to deal with failed fusion issues later down the road. Too bad they have to be normal, active kids! LOL

Keep up the good work!

[nikyergen]

Carmell,
Her dad is working hard, right along with me, to keep her slowed down. I just don't know how much longer she will stand for it. She is way to athletic to have to come to a stop now. She was pretty satisfied just going and watching a track meet today. It was cold and windy, so she spent time huddling with her friends.

Her dad and I are going to try to employ her to do the books for our business this summer. It will keep her busy and she will get a paycheck. So, maybe that will slow her down a little.


I think she was actually shooting from the free throw line faced up to the basket and feet planted on the floor. That's how she usually shoots from the free throw. I hope she doesn't keep trying to "bend" the rules, or we are going to have to glue her hands and feet down.

I'll keep you posted on how she does.

'til later,
Nikki

[Carmell]

All I can say is GOOD LUCK, Nikki! I so hope she doesn't do anything to disrupt that fusion... not a good thing. But, you can only remind her and hold her down so long. Kids... sheesh! LOL

[nikyergen]

Other than short of tying her down, I don't know what to do. She wears me out sometimes just watching her. I guess all I can do is keep reminding her of doctors orders and pray a lot.

'til later,
Nikki

[momofthree]

Thank you for your inspiring words of confidence. My daughter will be undergoing the surgery in late may, needless to say, I am a bundle of nerves, always thinking of the "what if..." I want to give my 16 year old encouragement, but it is SSSSOOOOOO hard as a mom to have your child be in pain and have to undergo this or any surgery. But again, thank you for your positive words.

[Lura]

Hi there girls!

I have had quite the past week! Alex ran a fever on Thursday of last week along with continued swelling at the base of his incision, so I called Shriner's and they wanted us in Spokane Friday. So off we went, they ran blood tests which showed infection so then aspirated the base of his incision (not fun for any of us). We were then admitted for observation and to await the results of the aspiration. We were released Sunday afternoon since the culture showed nothing. Now he has this awful cough and fever, so I guess this was the bug that was working its way out. Does this ever end??????

One of the resident doctors told us they would have to open Alex up again, take out the hardware and clean it and put it back - I freaked out on this imbesil (sp). I must say say that the 3 residents I have dealt with at Shriner's have sucked!! Anyway, I am now completely drained once again!

Enough venting! How is everyone doing??

Later,

Lura

[nikyergen]

Lura,
Crystal had some redness and drainage in her incision. She, too, was running a fever. It ended up being bronchitis and just had to do its thing. I was so worried about having to put her through surgery again so soon. I am glad Alex is okay and it ended up being his cold. Sorry you had a tough time with the residents. Crystal's residents have been great to listen too and seemed pretty knowledgable.

Give Alex a hug and tell him I am glad SUPERMAN is better.

Good luck to you on your move. We may have to move again. I have an incredible job offer in Baker City. It's to far for me to drive daily. We have to decide if this is what we want to do. Craig could keep his current job, since he travels everyday anyway. But, I am settled into this house and don't know what I want to do. I have my horses home and the girls have their breeding ewes home. Moving our household is such an undertaking. The extra money would be great, and the job pays great. I don't have to make a decision right away. I have a couple of months to make a decision. Maybe it will all be answered by the guy upstairs.

Love to you guys.

'til later,
Nikki

[susannajon]

Hi Lura,

I am so sorry to hear about your little guy's infection. That was my greatest fear when we were recovering! Sorry too about the resident scaring you like that. Send a letter to the hospital, because that guy (AND HIS BOSS) need to know how that made you feel, and how upsetting it was for you to get bad information like that. It will help him be a better doctor someday.

Nikki,

It is always tough to move. I would suggest a family meeting. Let the kids and hubby have their say, and go from there. I've passed over two opportunities, and acted on one in my carreer, and each time it was a family decision, and it worked out for the best!

[nikyergen]

Susanna,
We have had a meeting. Everyone is for it. However, we did decide that Crystal has two years of high school left, she could live with her grandma and finish school here. I told her she had to come home on the weekend though. That would be the only way I would do it. She would head for home at 12:30pm Friday afternoon and go back to school Monday morning. She would only be away from home for three nights, except during basketball season. Then she would only be home a couple of nights each week, and we would have to go to all of her games possible. We may have her leave her car at grandma's and Craig bring her back and forth on Monday's and Friday's, since his job is here anyway. It would be less gas, and at the price of gas these days. However, she has an economical car. She drives a Mitsubishi Eclipse. It gets good mileage.

Craig and I never make job changes without the girls having their say in it. So many times it affects how much time we get to spend with them. I used to work swing shift at a job, but before I took it, I let the family help decide. They needed to understand that I worked until late at night and they would be on their own for dinner, homework, and laundry they might need done the next day. They were all okay with hit and did well. But, they do like to know that their voice counts in our family. I expressed to the girls that their happiness at school is very important to us and that would make a difference.

Oh well, we have time to figure out the details. God will help us with this.

'til later,
Nikki

[KRIS ATKINSON]

Congratulations Nikki! Enjoy your new shift in life with the new career. What is your career outside your family, by the way? Kris

[susannajon]

Nikki,

You and Craig are such good parents. There's no doubt in my mind why your daughter has done so well with this whole scoli surgery experience. She is well on her way to becoming a strong independant woman thanks to you and Craig. You are doing a great job of preparing her for the future.

She will be a wonderful companion for her Grandma, and both their lives will be richer for having spent this time together. You sound like our family as far as our parenting approach. I am a firm believer that while kids need our firm guidance and leadership, they should also be recognized as a people who's opinion matters when it comes to major family decisions.

Listen to your heart and your higher power. Everything will work out for the best!

Susanna

[nikyergen]

Kris & Susanna,
I will be keeping books for a trucking company and doing some dispatching of trucks. I guess it goes hand in hand with having owned our own semi-truck at one time in our life. Craig has driven truck up until the last two and a half years. The girls were getting tired of only seeing their dad on the weekends. He would find out where their ball games were on Saturday and meet us there on Saturday mornings for breakfast and a day of basketball. When we decided to sell our semi and him go to work for someone else, it was a family decision. So, he went from long haul to driving a log truck. When he came home one night and told me that he almost widowed me that day, we decided he needed to do something else. So, now he works for Eagle Freightliner, selling parts. He enjoys it because it keeps him in touch with his buddies. It is so nice to have dad home at night to help with the girls. They are teenagers and that can be challenging.

We are trying to raise the girls that they don't need a man in their life to survive. That the reason for a good man should be companionship, not security. I hope you understand what I am trying to say. I am proud of them all. The two oldest are very particular about the young men they bring home. They won't date anyone that does any kind of drugs, smokes, or drinks. You ought to hear my girls rake these boys over the coals, when they think you can't hear them. They are athletes, along with the young men they bring home, and they all understand to be an outstanding athlete, you have to take care of your body and God only gave you one to take care of.

Anyway, thank you for your support. I worry about making the right decision, but if the family helps in the decision, then it has to be the right decision.

'til later,
Nikki

[susannajon]

Hi Nikki,

I feel very strongly that all children, girls included, should be raised to pursue their dreams. A loving partner is important, but it's just one part of a healthy, happy life! So cheers to you guys!

Susanna