Wednesday, October 5, 2011

A change in plans

Wow, I cannot believe it is already October and Ben is 10 months old! Many big things have happened since the end of June. The weekend of the 4th of July we went to visit Seth's parents along with his brother Jason and his family. While there, Grandma discovered that Ben's first two teeth (on the bottom) had broke the surface. We had a great time hanging out with family that weekend.

Soon after getting home from Grandma and Grandpa's, Ben started sitting up by himself!  After this things started happening pretty quickly for our little guy.  At the end of July he started getting up on all fours and rocking back and forth.  We knew soon, our days of being lazy and sitting on the couch were soon over.

Grammy, my mom, comes to visit about every other Sunday.  She just cannot get enough of him!  Ben really enjoys her visits and they play all day!
In August he began army crawling (more like a rowing action) and was all over the place!  He continued to try to crawl on all fours with much frustration for a couple of months before he gave up and decided his mode of transportation for the time being would be army crawling.  During this time period Ben also began clapping and it is one of the cutest things for us to see to date!    Seth went on his annual float trip with the guys toward the end of August and had a good time.  The last week of August I spent a week in San Francisco for work and it was not only my first five days away from him but also my first night without him.  It was hard for me, but he was in good hands with Daddy.  Seth and I learned how difficult is was to be the only parent in the house and had a "I appreciate everything you do" moment when I got back from San Francisco. 

In September Ben began eating table food and really had done a great job with it.  His favorites are cottage cheese, bananas, french toast, and ravioli.  This month he finally began to crawl on all fours and is pulling himself up and cruising around on the furniture!  Sometimes he forgets he needs to hold on and takes a tumble, but I have no doubt he will figure it out very soon.  Ben has taken to his sippy cup well this past week also.  He had two teeth on the top break the surface at the end of September so he has been having some pain with that and waking up at odd times of the night. 

I am still waiting for Ben to say "mama". That along with him not being able to pick food up with his fingers (fine motor skills) are the only two milestones to date he has not met that are expected at his age.  But, every child is different and I'm sure he will pick it up soon. 

For some time now, I have had uneasy feelings about the surgeon we chose for Ben's upcoming surgery.  I didn't like that he doesn't use a neurosurgeon during surgery and that he is the only one in the United States that does not.  This was a huge concern of mine that had been weighing on my mind for some time.  Seth and I had talked about this issue a couple of times and the decision was made that Dr. Singhal wouldn't be able to practice the surgery if he was not successful without a neurosurgeon and decided to proceed with our original plans to use Dr. Singhal.  At Ben's 9 month check up with his pediatrician, Ben's upcoming surgery was brought up and I voiced my concerns about him not using a neurosurgeon and other worries and she said she was not aware that he didn't use one.  She informed us that the reason she recommended us to Dr. Singhal was because he was the only one that she was aware of that performed the surgery in Kansas City and was adamant that if something doesn't feel "right" then we should seek another surgeon.  This confirmed my mommy instincts and that night Seth and I had another serious conversation about what we should do.  I had a great talk with one of the mommy's on my support website (you know who you are and thank you so much) that lives near Kansas City and I discovered her concerns about Dr. Singhal and they matched mine.  I knew since I joined the the support group website that she used Dr. Fearon in Dallas, but I really never asked why.  The last couple of months I have been doing more research and couldn't find a single person on the website that used Dr. Singhal and that made me very nervous since there are several people on there that live in the area.  I had asked Dr. Singhal's nurse several times for names and phone numbers or if they could contact their patients' parents for me so I could talk to them about their experience with Dr. Singhal and we felt we were dismissed.  They never said they wouldn't do it but never actually put us in contact with them either.  This added to our concerns.  So, after Seth and I discussed things, we decided we needed a new surgeon and my research on the support group concluded that Dr. Fearon is a a very popular craniofacial surgeon for a reason.  He does ONLY surgeries on kiddos with craniosynostosis!  So, he is highly specialized and does about 100 of these surgeries a year.  Also, from pictures I have seen he does amazing work!  I spoke to his nurse and she recommended that I email Dr. Fearon with a history of Ben's diagnosis and some pictures.  I know it sounds crazy but we felt completely comfortable with a diagnosis over email because when you know what you are looking for with craniosynostosis, it is so easy to diagnose by just looking at someone.  I emailed Dr. Fearon and his nurse and his nurse got back to me shortly answering all of my questions.  Even Dr. Fearon emailed me back (on a Sunday-WOW!) also answering my questions.  He confirmed that Ben does need surgery and that he would put him in the moderate category.  We immediately felt comfortable with this surgeon for many reasons.  He impressed us A) He uses a neurosurgeon during surgery, B)  He has done a lot of research and is published a ton of journals, C) He is highly specialized (only 6 in the United States are this specialized), D) He uses procrit injections prior to surgery to increase their blood supply so they have less of a chance of a blood transfusion, and E) He uses Ben's own blood that is lost during surgery and gives it back to him to try and prevent using the blood bank.  I'm sure on the surgery day and afterwards I will complete the alphabet with my impressions of Dr. Fearon.  His insurance specialist has already contacted our insurance company and started the process there.  He is not covered in-network for us, but we do have an out of network plan, so at least we won't be paying $80,000 for the surgery.   I feel they have bent over backwards to make us feel that our son is in the best hands possible.  Although it is bitter sweet that we have a new surgery date that is sooner, October 28th, we feel a sense of relief after choosing Dr. Fearon.  The uneasy feelings I was having about the surgeon and care of my child are gone.  Completely.

Ben started his Procrit injections this past Friday and also his iron supplement this week.  Ben smells like batteries from the iron supplements but it is worth it to make him stronger for surgery  :).  We are a little less than three weeks away from surgery and my anxiety is starting to get the best of me.  I am trying like hell to stay strong but sometimes my emotions get the best of me.  Seth has been my rock through all of this and I couldn't go through it without him.  I have no doubt that we have chosen the best surgeon/surgical team, or that Ben will make it though all of this perfectly, but I am just mad.  I hate that this has to happen to him and wish so much that I could take his place.  But I continue to remind myself that I cannot be in control and that God is.  I give my worries to God every day and pray for strength for Seth and I and health for sweet baby Ben.  I know that He is with us during this time.  Please continue to pray for our little angel. 

In times likes these you realize how many good people are in the world and what great friends/family we have.  All of you have been amazing.  We were surprised and humbled by the generous gift of airfare to and from Dallas donated by our friends Allison and Kyle.  There is no way we can even begin to thank you.  Our other friends Shayla and Bob want to reach out to our friends/family to fill a food calendar for us when we get back from Dallas so we don't have to worry about making dinner.  Thank you so much for being the people you are, this will be a tremendous help.  Again thank you, thank you, thank you to all of your who have supported us through this time.

So, the surgery date is October 28th at 1:30 at Medical City Children's Hospital in the craniofacial center area.  We will leave Kansas City and fly to Dallas on the Wednesday before surgery, the 26th, and then all day Thursday before surgery he will have appointments for blood work, head measurements, pictures, etc.  Ben will be in the PICU for one day and then be moved to a regular room the second day.  After the two days he will be released from the hospital, but Dr. Fearon has asked that we remain in Dallas for a couple of days just in case.  So, we will return home on Wednesday, November 2nd.  I am taking off work through November 13th to care for him.  Seth is only able to take off through the 6th and I'm sure it will be harder for him to go back to work this time than it was when Ben was born.  Seth's parents will be watching Ben the first week of me going back to work which will be very helpful.  Seth's parents are also joining us in Dallas and we are so thankful that they are able to do this.  I'm sure we will need the support.    I plan on blogging while we are there so you can be aware of Ben's progress. 

Please pray for Ben's speedy recovery.  Although my worries consume me I have been told that it is much harder on the parents than it is the child and that they recover so quickly.  We are just looking forward to being on the other side!!!!

Thank you all again.

Breanne & Seth