Lucas' Caring Bridge Site

Here is Lucas' caring bridge site http://www.caringbridge.org/visit/lucashaase Until after his surgery February 15, I will be keeping this up to date.  Please check this for updates on our baby!!

update 12/22/11

Hello everyone!  Not sure where the time goes, but it looks like I have been a bit neglectful in my blogging updates, so here ya go.

Andrew's surgery was on Tuesday and praise God our prayers were answered.  Everything turned out better than expected and his parts are where they are supposed to be!!  He did a great job and has been such a good patient!!  Grandma Pam has been at our house tending to him the past couple of days and we really appreciate that, so we don't have to miss more work.  I know some may judge me for working outside the home, but the only one who can do that is God, and this is what works best for our family. 

Jacob's tube surgery is scheduled for January 3rd and hopefully everything will stay put this time!!  Poor guy has had an ear infection that will not go away, so I am hoping this will get rid of it.  Other than that he is our little stinker and keeps us on our toes.

Lucas is still our happy little guy despite all of his medical issues.  On December 6th we met with the craniofacial team in Minneapolis and were very impressed.  So much so, we scheduled surgery for January 30th.  We are going to Dallas next week to meet with the craniofacial team down there to make sure we are making the right decision by Lucas, but we are confident we are doing right by him.  I am ready for it to be over and for all to settle down for a bit in our home.  I am going to take him to the nephrologist (kidney specialist) tomorrow for his three month ultrasound and check up, and we are praying for good results with this as well.

 

Thursday

I have found that I am not a clever blog title updater.  I just don't have the energy or cuteness to come up with titles it seems.  So since it's Thursday, I thought, hey let's call this blog post Thursday (it's like Billy Madison said I wanted to color the duck blue because I've never seen a blue duck).  ANYWAY!!!  Here is the latest on our kiddos:
Andrew is scheduled for surgery in DSM on November 30th.  So now its the waiting game for that.  We also have an ENT apt for him on the 22nd to get his ears checked out in case he needs tubes again.  We have been watching this for awhile and I hope he won't need surgery again for this either.

Jacob: We meet with the ENT on the 22nd as well to see the status of his tubes.  So we will know (maybe) at that point what we will do about his ears.

Lucas: We are going to MN to meet with a specialist there December 6th and then December 29 we have an apt scheduled in Dallas to meet with the specialist there.  At that point we will decide who we will go with and when we will preform surgery. 

So that's the latest.  I am so ready for Thanksgiving.  I hope to relax, drink a beer, and maybe squeeze in a nap.  Oh and eat some turkey, but that comes after the nap.

Sunday's update

I supposed I should have updated this sooner, but life gets away from me and I hardly have time to breathe it seems!  I heard back from Dr. Fearon in Texas, and from the pictures I sent him of Lucas, he states he is a candidate for surgery.  So now comes a lot of questions about what John and I are to do.  We have to make a lot of decisions fairly quickly as Dr. Fearon likes the surgery done by 11 months.  He will be 8 months tomorrow, so we have a lot to do in a pretty short time.  I will keep everyone posted on that. 
I am going to meet with Andrew's surgeon tomorrow and will have some questions for him as well.  His surgery is scheduled for the 30th and I hope and pray all will turn out how its supposed to.

On a more fun note, my parents are here visiting providing John and me a much needed break.  We went to the Hawkeye game yesterday with Paul and Emily and cheered the Hawkeyes onto victory against Michigan.  yes I know I am from MI, but I wasn't a big fan when I lived there, and its much more fun being a Hawkeye fan anyway :-)  We had a great time and are already looking forward to next season!!

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.
love
The Haase's