Busy week!

[vancesmommy]

Well Vance has had a busy week so far! Monday he had an appointment with his ENT because one of his ear pits got infected. We walked out of there with a surgery date of Aug. 25 to remove them. It isn't that major, it is a day surgery and shouldn't take more than 1 1/2 hrs. I am still nervous though, this will make 5 times that he has been put under.

Then yesterday he seen his eye dr and ns. The Dr. is very happy with his eyes. He said his vision seems to be getting better every visit. His eye is still wandering quite a bit, but he seems to be able to focus it when he needs to, and it isn't affecting his vision at this time. So the Dr. said as long as he can control it the way he is now, they like to hold off on surgery until they are around 4. We go back in Oct. for another check up, we are getting David's eyes checked at that time too. Kind of curious to see how that goes, he seems to run into walls a lot! So either he has daddy's eyes, or mommy's balance! haha.

I'm not real sure what to think about the NS visit. He said he didn't feel any defects, but you couldn't be sure by just feeling. He asked what my concerns were and I told him I was cosmetically concerned as it seems things have settled quite a bit. I am also concerned about about light sensitive he is (eye dr. doesn't seem to concerned with it though) and that he seems to rub his head a lot. He is never crying or fussy about it, but he seems to rub it a lot! He told me again that 10% of patients need a second surgery and that most of those are metopic. He said metopic is the hardest to correct with one surgery. So anyways, we have another CT scheduled for Aug. 3, and hopefully he will be able to look at it before we leave for OH. If not I'm going to try and get them on disk to take to OH for the PS to see. The NS said we would decided after he sees the scan and hears what the ps has to say. I don't even want to think about a second surgery, but I want to do whatever is going to give Vance the best quality life.

Tomorrow we see the geneticist and hear his opinions on what syndrome he feels Vance has. Don't think it is going to change anything, Vance is Vance and no label is going to change that. He seems to be proving everyone wrong anyways!!

[Jennifer]

That's a busy week.....little trooper- that's alot of appointments in one week! I'm sorry that he'll have to have another surgery- no matter how 'small' it's big when it's your baby.....I'm glad his eyes are doing well and everything is improving. As for the NS appointment...I'm sorry you didn't get to many definant answers....that's always hard when it's vague. Do the NS and PS live in different states? When do you go see the PS?

:hugg :hugg

[laurensmom]

Wow..he is a trooper. They amaze you dont they..did he give you a name for his eye wondering? Can they patch it? I hate when you don't get the answers you want..it leaves you more frustrated than if you knew what lies ahead. You are in my prayers. Please keep us up to date.

[Matthews Mommy]

Well you had a busy schedule, I am right there with you:hugg. Our schedule's been crazy too. I hope everything goes well with genetics and the CT.

[vancesmommy]

Jennifer- While my husband was deployed last year the boys and I were staying with family in Ohio. So that is where Vance had all of his surgeries. We moved back to GA in January, and he has seen his new NS here, but we haven't met with a PS yet. So I figured since we were going to OH to visit I would just make an appointment to follow up with his PS that did the surgery. We go see him on Aug. 9.

Denise- I think his wandering eye is some degree of strabismus? We did the patching for a while, but the dr. said he is doing really well focusing and using his "bad" eye that we don't need to continue. We will just continue to watch and as long as things stay the same we will hold off until he is 4.

His genetics appointment went really good. He feels comfortable saying that he has C syndrome because it is the only trigonocephaly syndrome that includes cleft lip/palate. However there is no way of knowing for 100% unless someone starts researching it. The good news is that it won't get worse. Aside from what he will have to deal with his "unique" features he will have a perfectly normal life. He said the only thing we need to worry about is any future pregnancy. We have a 25% chance of recurrence, but the outcome shouldn't be any worse than Vance if it did happen again. So as far as I am concerned there is nothing to worry about! Vance has changed my life in so many wonderful ways, and I wouldn't trade him for anything. My mom really upset me because she said "we really need to stop and think before we decide to have another. We had David who was "perfect" and Vance "with all his problems" is it a chance we need to take?" This is all I have thought about for the past 19 months! If the only chance I am taking is having another child just like Vance I can't lose! He is perfect in my eyes. So anyways, we considered it a good news and will be trying in a few months for number 3.

[mikaylasmommy]

Denise, don't worry about what your family says about your family planning. I just ignore everyone in my family. If I have another baby that has to go through surgery than I will have to deal with that. It is my choice. Yeah, we hope for no surgery or complications but, why should we have to change our idea of what our family should be because everyone else in thinks it would be hard to deal with. I don't know about Vance but, Mikayla is pretty much done with surgery until she is a teenager.
One thing I think is really neat about our children is they tend to have a different outlook on life. When I am looking online at pictures of babies with cranio pre-surgery. Mikayla will look at the babies and tell me how beautiful they are. I think that is so awesome that having lived through what she has that she can see the beauty in anyone! What would be wrong with having another child that accepts people for who they are and sees beauty when others don't?

[Jennifer]

My mom really upset me because she said "we really need to stop and think before we decide to have another. We had David who was "perfect" and Vance "with all his problems" is it a chance we need to take?" This is all I have thought about for the past 19 months! If the only chance I am taking is having another child just like Vance I can't lose! He is perfect in my eyes. So anyways, we considered it a good news and will be trying in a few months for number 3.

I'll start with the end first...... YEAH! I love babies and am happy that you are going to try again. :cheer THe beginning part....I know we gotta love our moms and they mean the best...but that soo frustrates me....my mom said the same thing (in different words)- "Your done now aren't you?" I'm not sure mom, why? "Well you wouldn't want to risk what happened to Emily again with you?" I responded w/ the statitics that it's a fluke, etc, etc....But that night I was mad- I wouldn't trade Emily for anything- I think this cranio has made us all better people (though you couldn't have told me that going through the surgery) and wouldn't hesistate to have another.........
Anyways, I've ranted again.....I'm glad his appointments went well, glad you got some answers.....Good luck at the PS appointment and have fun in the 'trying' process :giggle

[Matthews Mommy]

I am so happy that everything went so well, don't worry what anyone says Matthew is undiagnosed till we see the genetics but I went and had another after him, and she is perfect. I did worry but they checked her growth carefully with ultrasounds and assured me that she was fine. Hope to hear about a future little one soon....good luck!:icon_mrgr

[plukids]

Hi Denise! Sorry to hear about the ear surgery. I will pray for Vance. No matter what procedure it is always hard when you know they have to be put under anesthesia. Keep us posted on your PS appointment. We're pulling for ya'!! Yes.......have another baby. Vance is an absolute doll! David is too!! Life experience is what makes us who we are. I have changed a lot since Sylvia entered our life. The cranio journey changed us....for the better!! Each child changes our life in their own way and they each have their own deal. Each one of my kids have something unique to them. Anthony has a heart murmur and reflux, Frank has eczema and whoa a temper beyond belief (we call him Cranky Franky.....yes, a capital C on Cranky!), Casey has his respiratory problems (nebulizer kiddo) and his urethral malformation (that was corrected) and Sylvie has her cranio. Gosh if I would have stopped after the first I would never have known the treasures of the others. I agree that Sylvia by far has had the scariest surgery but you know what, if hubby and I had wanted to keep having babies ......WE WOULD!! We love them so much! I was on bedrest with my pregnancies all for different reasons. I remember family and friends telling us their opinions on how we should not have anymore. We were lucky for what we had and should not "risk" more. It is so hard. HUGS to you in dealing with others' opinions on your decisions....it is not an easy situation. I am so happy you are trying for #3!!!! I'll pray for a quick conception!!

[Matthews Mommy]

Lisa I so agree with everything because I too have had so many challenges and hurdles it's crazy. I was very high risk and had to inject myself everyday with blood thinner, All of my kids have something ranging from high functioning autism, to Cranio, and severe allergies and chronic bronchitis. It is absolutely crazy from other peoples eyes....but there really are a lot of us families out there with the same challenges, some choose to hide it.
Thanks Lisa for sharing it was very reassuring to know that I am not cursed....thats how it feels sometimes when so much happens to you.

[ExpatJen]

A risk of cranio. would never stop me from having another baby, even with the insentive comments of people. My own mother burst into tears when she first saw Audrey and I had more than one person ask if she had Down's. I think they were all nuts! I agree with Jennifer - these kids are special. My Audrey loves life and the world is a much better place with her in it!