Alex is Home!!

[nicoles mom]

[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