Friday update

I am still waiting to hear back from Dr. Fearon in Dallas.  I am a little surprised that I haven't heard from him because other parents I have read about on the site cranio kids heard back from him within 24 hours.  So I can take it as, his head isn't that bad and so he doesn't feel an urgency to get back to us, he's on vacation, or he's been so busy fixing other babies heads that I should just calm down (with hand motion, this goes back to college days with my friend Autumn).  At any rate, I did contact Gillette Children's hospital in Minneapolis today to have a consult with Dr. Wood.  We have decided to meet with him to see what he has to say and I am going to have a ton of questions for him as well.  We are currently scheduled for November 29 (the day before Andrew's surgery, perfect timing insert sarcasm), but they are hoping to move us up.  Dr. Wood is on vacation the first two weeks of November, so hopefully we can get up there before that.  I also have a CT scan scheduled for Lucas on the 15th of November, but I will most likely push this back as well.  Reason for that, Dr. Fearon has done 25 studies where a CT scan isn't necessary and he doesn't want to expose a child to radiation.  Lucas has already had three tests where he has been exposed to radiation, so if we can get away without having a CT scan, I am all for that!  So we continue to wait and pray that all goes well. 

I finally did it!!!

I went ahead and emailed Dr. Fearon tonight!!!  This is the craniofacial specialist in Dallas.  I finally heard back from the pediatrician that referred us to Dr. Frank and I can honestly say I am glad I do not go to this pediatrician!  Our PA that we see wanted us to see a Ped. to make sure she wasn't missing anything in terms of Lucas' head.  At any rate, he basically said (through his nurse) that Dr. Frank (who mind you is a plastic surgeon and not board certified) would be a good match for surgery.  Really, gee thanks Doc but no thanks.  He did get us some information about Gillette hospital in Minneapolis, so I am going to do some checking there.  This pediatrician is very nonchalant about the whole surgery and at one point stated that I know more than he does!  I find that to be a very telling comment as I have just started to do research on craniosynostosis and hadn't heard of it until a month ago so I really don't think I know more than this Dr., but I am trying to find out as much as I can so I know the right questions to ask when going into such a serious surgery.  I am very anxious to hear what Dr. Fearon is going to say.  I basically asked him if he thinks Lucas is a candidate for surgery and I sent him some photos.  We will see.  I pray that God continues to lead us in the right direction and we come to the right decision that is in our hearts.  We want to make sure we seek out every option and thoroughly weigh our decisions as what we do will affect Lucas for the rest of his life.  Please continue to keep him in your prayers, along with Andrew and Jacob.

where we are a/o 10/22/11

I wanted to update our blog with what's going on with all three boys.  Needless to say its been stressful due to all the unknowns, but I am praying that all will work out the way its supposed to.  I'll start with oldest to youngest:
Andrew had a communicating hydrocele a few years ago that was repaired surgically by a pediatric urologist in DSM.  At his five year well child our PA could only feel one testicle and so she ordered an ultrasound to see what's going on.  Unfortunately, the testicle is not where its supposed to be and so we were referred to Dr. Glowaki who is a urologist.  The surgeon who did his surgery the first time is no longer in the state (I can't get anymore information as to why) so we met with Dr. Glowaki.  He wants to do an exploratory surgery to see what's going on and to see if Andrew's testicle can be salvaged.  I have asked for a 2nd opinion in IA City (which is incidentally the same Dr. we see for Lucas Dr. Kieren), but the earliest we can get in with her is Feb 7.  Currently we have his surgery scheduled for Nov 30 and if we can't get in with IA City sooner than we will most likely go ahead with the surgery Nov 30.  So many prayers that the Dr. will do right by Andrew with all of this.

Jacob had tubes put in his ears in January.  Since then he has had two ear infections and the last time he went to the Dr (which was about 2 weeks ago with an ear infection) the Dr. didn't think either tube was where it needs to be.  The earliest I can get in with Jacob's ENT is Nov 22, so we wait and see if he will need to have surgery again or if the tubes are where they need to be.  Again more prayers for our little Jake-man.

Now onto little Lucas.  As you might remember, Lucas has urine reflux.  From his last ultrasound a month ago, the Dr. in DSM and IA City are happy with the progress, but we are still not out of the woods as his reflux is still Grade 5 (the worst).  We go back to the nephrologist in Dec for another ultrasound and follow up to see where we stand.  IA City already has scheduled a VCUG for March 30 and from then (I assume) a decision will be made if he has grown out of it or surgery is needed.  Concurrently, as some of you know I have a thing with heads, head size, and mis-shapen heads and I have always been very worried about my children's heads.  Well maybe this is biting me in the a$$ now because I little Lucas has been diagnosed with craniosynostosis of the myopic suture.  Basically he has a ridge on the front suture (basically the bridge of your nose, up to your soft spot is where the suture runs).  I have always noticed it, but didn't say too much because I didn't want people to think I was nuts.  At any rate at his 6 month well child our PA took noticed and referred us to a pediatrician.  He then referred us to a plastic surgeon who said that he does have craniosynostosis.  I have requested to go to Mayo clinic for all CT scans and if surgery is needed.  The issue is if the sutures close too soon it can cause issues for his brain because it will have no where to grow.  I have done a little bit of looking on-line and currently I am comfortable with Mayo and a hospital in Dallas, TX.  The pediatrician is also looking at Gillette Children's hospital in Minneapolis, so I am waiting to see what he comes up with.  So more prayers are needed for our Lucas.  He is SUCH a happy baby and  has been through so much in his 7 1/2 months of life. 

I just pray that all these Drs. know what they are doing and lead us down the right path...for all of our children.

So there's the update for now.  As soon as I know more I will update the blog.  So please check back often.
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The Haase's