Mom to many, Mom & Grandmom to CS Angel Babies

[Lori]

Wow! This is such a wonderful and powerful site... glad I found it. My son had CS and surgery in 1984. Except for my mom, I was alone and very scared. He was only 6weeks old at the time of surgery... it lasted over 3 hours. He came through with flying colors, like a trooper. I learned much and aged much through it all. I took that experience and went on into the medical field and today help many sick children as a lab tech.
My son Jon is now all grow and handsome, his wife is very sweet. We were blessed with Jon Jr on August 16th,2006. His first pediatrician said he was fine. He was taken to a second doc, and she saw the problem and has set us up for an appointment with a NS next Monday.
- Called Jon's surgeon from '84 for support... I have kept in touch with him over the years with cards and pictures on his surgery anniversary. "I love this man!" My hero, Dr. Hal Hankinson.
I love this whole idea of people helping people. I am interested in the genealogical aspect of it all. Looking into Jackson Weiss ... anyone know this. A chromosome 7 problem?

Well, I go with the kids to take Jon Jr. to his appointment with his NS on Monday. The biggest thing I've learned is, they need us and we need them... That's why I call them my angel babies.

Tip of the day from me:
Check out the phlebotomist!!! Make sure you ask them if they have drawn babies and how long. These babies have enough to go through, learning can be obtained on others not so picked on! Yes, at times it can be hard to get a good blood specimen... but you want someone experienced and someone who is caring. If they do not meet these things, ASK for someone who has done this the longest.

Tip for me is to just do what we as mothers know to do best, stay by our children and love and support them as best we can...
With all this , I find deep down I'm terrified all over again.

[Jennifer]

Welcome Lori! Wow, what insight you can provide. What type of cranio did your son have? Does your grandson have the same type?
That is so cool that you have kept in touch with your sons surgeon for 20+ years. I love ours and would hope to do the same!

Of course your terrified-- just because you've done it once, doesn't mean you want to do it again. Surgery is scary.....like your son did, your grandson will amaze you.

Again, welcome! We're glad you've found us!

[cheryl2]

Welcome, and
Congratulations on your new grandchild :-)

Is the surgeon who performed your son's surgery also going to do your grandson's?

Is Jackson Weiss the name of a syndrome? I've never heard of that one. Both my daughter and I have Saethre-Chotzen, which does happen to be located on chromosome 7.

Take care.

[Katie]

Welcome Lori, and congratulations on the new grandbaby! I've done a lot of research on the geneteic aspect of crnaio myself, it is believed Dillon has Saethre-Chotzen synedrome.
Thank you for your advice on on flabotomist, I wish I would have asked questions the first time Dillon had blood drawn for genetic testing. It took three people and 1/2 an hour to get one tube :cry the the last person who tried got it no problem at all!
PLease let us know how the appointment goes on Monday! :hugg

[craniomommynbaby]

Welcome!
Our cranio is genetic, too. We have been tested for Saethre-Chotzen Syndrome, and that was ruled out. Next, they will probably test for Crouzon's. I have heard of Jackson Weiss, but I do not know anyone who has it.
It is nice to hear another grandparent's perspective on all this. My father was with us during my son's surgery, and I could see the fear in his face. In some ways, I think he was more scared than I was. I guess his past experience with me made it harder. I look forward to hearing more of your story.

[mom2mykidos3]

:welcome
Keep the wonderful advice coming. You sound like you have a lot of really good insight into all of this. Thanks for sharing.

[Matthews Mommy]

:welcome I too am very happy you found us! Congratulations on your grandbaby. Lots of hugs and prayers for your family at least you can provide comfort having gone through this.

[Lori]

Thank you all for your kind words, the support and knowledge. I cannot put into words how good it has made me feel. ..outstanding of you all.
I am new to this computer stuff so bare with me. I am still doing research on my own and it is overwhelming at times as many things have changed. We know so much more now than we did 20+ years ago. I'll note my findings however 'typical Virgo', must get it all together first.
Dr. Hankinson, my sons surgeon is not doing my grandsons surgery, however he will be involved. I am in contact with him as of today, they are anxious about Monday also.
Picked up Brandi after work and got her out of the house for awhile. With all this winter weather we've had, he is recovering from an ear infection and some congestion in his lungs. I am so proud and grateful for her. She is a good mom. Jon Jr of course is as vivacious as ever, yet he cannot socialize out of the house much until he gets over it. He and dad had quality "man time".
I had such a tough day today. Work was a challenge to keep it together as I know i must, but it was harder than most days. I always go out of the box to help others, I walk elderly out to their cars if they are ill and give cookies and juice to moms that look just beat. It takes the simplest task to make a positive difference in another persons life. Today, you all helped me. Very Touched.
Hugs to all the grandparents, what a fantastic job they did in all of you!

[mom2mykidos3]

The only thing that comes to my mind when I read your posts is WOW!! My grandma died when I was only 4 so I have never really had one. I wouldn't mind having you in her place. HA HA. Thanks again.

[Lori]

My son said Jon Jr. sounds all clear today. They are all very busy and excited moving into their first house. I can't figure out the picture download yet HA!, but I will keep it on my 'to do' list, because Jon Jr. is just the cutest! Waiting... and waiting for the apt. on Monday.

Till then, To Heather.... I am always here! I know a little about our elderly and those who have moved on. I was Director of an In-home Care and Support Company for elderly (Specializing in Alzheimer's). My company was the best, we were all family. I have to top the list of how many grandparents one can have! It's not rocket science, it's all about love and understanding and I had no problem seeing that my elderly got the best dignity and respect they deserve. Also, great people to hang out with. If you listen to them, their stories can amaze you. Back to my point... Sweetie, your grandmother is proud of you and her great grand kids, and she is still connected to you through love. Your respect and love for her makes her even stronger with you. When we leave this world, we do not take with us things that are so valued here... TVs, cars, houses...the thing we get to keep is the love we have. The thing on my mind is, She Is Smiling:giggle , because it is you that is being trained to be a warrior and to make a remarkable difference!

Wow, I am so used to being called every one's mom. Now I'm a grandma! That is so COOL ! I am going to make this Grandma thing look good!

PS Anyone know how I can find someone in the Army in Iraq? I helped a young girl, she calls me mom and I am very worried as I have not heard from her and I can't get any answers. - PVT Gage, Kerri, BCO 1-61 Inf. Reg. "Mad Dawgs"-

[Lori]

Welcome Lori! Wow, what insight you can provide. What type of cranio did your son have? Does your grandson have the same type?
That is so cool that you have kept in touch with your sons surgeon for 20+ years. I love ours and would hope to do the same!

Of course your terrified-- just because you've done it once, doesn't mean you want to do it again. Surgery is scary.....like your son did, your grandson will amaze you.

Again, welcome! We're glad you've found us!

Thank you for your hospitality. My son had Sagittal and Lambdoidal Craniosynostosis. Dissection was carried well across the lambdoidal sutures posteriorly and well into the temporal regions bilaterally. Holes were drilled in the midline strut as well as in the frontal bone just anterior to the coronal suture on both sides creating a great cosmetic result.
Don't know what kind Jon Jr. has. I can see frontal bossing, he is the split image of his daddy. Thing is, I was told years ago this was not hereditary. I'd say this is. Our apt. with the NS is Monday. I will post the results.