Sunday, July 20, 2014

St. Louis Here We Are

When I started this blog, it was to chronicle our clubfoot journey. We had already been down this road with our oldest son when he was an infant, and we had just found out we were expecting our second clubfoot baby. We had also found out that the doctor we had used for our oldest was no longer practicing, so we needed to find a new doctor. This began my extensive (and exhausting) research about clubfoot.

I began to realize how different Oliver's treatment was from the norm. He did not have the surgery to lengthen his heel cord (tenotomy) on either foot. This happens occasionally but rarely. But the thing that was most different was that instead of the usual bar and boots brace, he wore a custom orthodic called KAFOs - knee, ankle, foot orthodic. And we were told to stop them at 13 months old, instead of the 4 years that is usually recommended. I also started reading about relapses. Some children, for various reasons, have a recurrence of their clubfoot and have to undergo additional casting and surgeries. Relapse was never something that was mentioned to us. Oliver's last appointment with Dr. Cummiskey was when he was about 21 months old.

Had I done research at the time I would have questioned his doctor and asked for the standard treatment. But Oliver did so well that I didn't even think to ask. His feet looked amazing and we were so happy.

During the winter/ early spring of 2013, Oliver was in speech therapy and a physical therapist noticed how he was walking - on his tip toes. We decided to do some physical therapy with him to stretch his feet and see if we could correct that. The therapy helped, but we began to really worry.

In July 2013 we went to Indianapolis to meet with Dr. Kayes to see if he was who we wanted our second son (who was due in September 2013) to be treated by. We took Oliver with us to see if he would take a look at him. Without us even asking, he started to look at and manipulate Oliver's feet and examine them. He said while there may be a little tightness, it wasn't anything concerning and to just encourage him to walk on flat feet and keep up the stretches. We were relieved.

However, Oliver's tip toe walking continued. And it seemed to get worse. There were times he seemed to walk more on the outside of his feet and when he did walk flat footed, it wasn't for long. I worried so much about him. Finally, we decided to contact Dr. Dobbs, one of the best clubfoot doctors in the nation.

I had been in contact with Dr. Dobbs previously when I was looking for a doctor for Max, and had entertained the idea of taking Max to him for his treatment. We ultimately decided to stay in Indiana for Max's care but I always kept Dr. Dobbs in mind in case anything emerged that I felt we needed expert care.

One night while getting ready for bed, I asked Oliver to walk around a bit while I took videos. I then sent them to Dr. Dobbs and asked his opinion. He replied that same night saying he could see that there was tightness in Oliver's heels and his forefeet turned in, and that Oliver would benefit from treatment. He said to let him know anything he could do to help.

My heart sank. In my heart I had expected this, but part of me had hoped he would say, "oh it's ok, he will be just fine!" Over the next few days, Dr. Dobbs and I exchanged numerous emails. He explained that he would first try casts because at times that can correct the problem. If not, then we would talk about surgery - either tenotomy or tendon transfer.

I talked with his nurse, who explained different outcomes depending on what Dr. Dobbs sees when he examines Oliver. Because Oliver was born with bilateral clubfoot, both legs will be in casts. They say we will be surprised by how he finds ways to get himself around at home, but we will also have a wheelchair for when we are out and about. We just don't know what to expect because so much depends on what Dr. Dobbs says. But there is a very good chance that when we leave Dr. Dobbs' office, Oliver will be in casts.

We have not told many people about what is going on. We haven't even told Oliver yet, because we don't know much to tell him. We will briefly explain to him tomorrow the best we  can. We didn't want anyone to say anything in front of Oliver, so we have been pretty private about it. I am just now sharing publicly , even though I still don't know much to say. There are so many unanswered questions.

We just arrived in St. Louis tonight (Sunday, July 20). Tomorrow at 2:45 (3:45 at home) is Oliver's appt.

My heart is so heavy thinking about it all. I just can't process it. Prayers for our sweet Oliver are appreciated.

Sunday, July 13, 2014

Trying to Catch a Breath

Hello all,

Its been so long since I've been able to post.  Forgive me for being so lax in updating.  I feel like since the start of 2014, life has been an extreme roller coaster.  Briefly, this is a run down of our year thus far:

January 6, 2014. 

Our sweet boy spent 2 nights in the hospital in January.  He won all the hearts of all his nurses with his sweet smile!
In the middle of a crazy blizzard, we ended up having to take Max to the emergency room because of an infection (unrelated to his clubfoot).  Jay's parents were snowed in at their house, so we had to load all 3 kids up in the van and attempt to make it to the hospital.  It was traffic allowed on the roads except for emergencies, and it took forever, but we made it to the ER.  Max had to stay for about 48 hours in the children's wing at Lutheran Hospital, a horrible and exhausting stay.  Jay still had to work while we were there, so thankfully he was able to get to his parents house and take Oliver and Lucy to have them stay with their Nana and Poppa.  Max had a rough stay and it was, to be honest, very traumatizing for this mama.  He is doing fine now, has had his final follow-up appointments with specialists, and we will hopefully never revisit those issues.

March 13, 2014

Our beloved Poppa.  We can't wait to see you again in heaven.
Jay's dad, our beloved Poppa, unexpectedly passed away.  I have never felt such a loss, such a deep grief, as losing my father-in-law.  I could go on and on and probably should write out those feelings someday as a way to heal, but this isn't the time or place.  What was supposed to be a routine procedure turned into something much worse, and before we knew it, he was gone.  My heart still aches every day for the man who took me into his family and loved me like his own.  I long to hear his voice and feel his hugs.  Life is very much felt in a "before Poppa died" and "after Poppa died" time frame.  I couldn't bring myself to even think of blogging for the longest time after he passed because nothing felt right, nothing felt the same.  And I knew how much he loved reading my posts.  Its hard to even think of posting this one knowing he will never read it.

April 7, 2014.

Max right before his tongue and lip tie revision.  Dr. Notestine was amazing!

 We drove 3 hours to take Max to get his lip and tongue tie revised.  After dealing with some breastfeeding struggles with Lucy, I discovered she had a lip and tongue tie.  Shortly after Max was born I realized he had the same, and knew we should get it corrected.  He went through so much after he was born with his clubfoot correction that I couldn't bring myself to do anything else to the sweet baby.  So we waited.  I had actually called in February and scheduled the appointment for March 13 - and then had to cancel it because Jay's dad died that day.  So we rescheduled for April and had it done.  It was quick, and the changes in his nursing habits were immediate and so worth the trouble.  But it was still hard to see him go through the procedure.  The days that followed were also very hard because we had to do stretches to keep the skin from reattaching.  He would scream and scream and it just broke my heart.  I'm very thankful, however, that we did it and that we made the long drive to go to someone who is very experienced and very good.  If we have another baby someday, I wouldn't hesitate to go back to Dr. Notestine if we need another revision.

May 2014.  Nothing seems as awful after the death of one of your closest family members.  However, things still are hard.  There's just no denying that.  One week early in May Max was running a low grade fever and just not feeling well.  I could tell he had teeth very close to coming in, so I held off on going to the doctor. One evening I had a mom's night out at Oliver's preschool, and when I got home, Max had fluid running out of his ear.  His ear drum had ruptured. :(  I felt so so awful.  I took him to the ER, had a wonderful nurse, and was back home quickly with medications to help him.  It seemed like things were getting better, until about 3 days later, he started having an allergic reaction to the amoxicillan.  He broke out in a terrible case of hives and it was absolutely awful to see.  It scared me to death to see my sweet baby so covered in horrible bumps and splotches.  My sweet boy has been through so much.  His feet swelled so much that his braces left bruises on his feet.

Max's reaction to his antibiotic was so awful to see. Thankfully it didn't seem to bother him at all!

May was also the month that Oliver, our oldest, graduated from preschool.  That was an emotional time for me as a mom.  Not only because our oldest was finishing preschool, but because I knew we would soon be moving and so many changes were happening and had already happened to us recently.  I'm so proud of Oliver and all he has accomplished.

Oliver's graduation from preschool.  The interaction between Oliver and Max is so sweet!

June 2014.  We became homeowners!  It was something we had dreamed about for years and it finally came true.  We were fortunate enough to build a house and although the last few weeks had some bumps in the road for the most part it was a smooth process.  It was hard in some ways to leave the small house that we had rented for almost 4 years.  We had pretty much built our family there.  Oliver was not quite 2 when we moved in, and Lucy and Max were born while we lived there.  We absolutely love this new house and feel blessed to call it our own.

In the final phases of building.  We love it here!

July 2014.

This month has been busy so far getting settled into the house- which is a much harder task than I ever imagined with 3 little ones around!  I had expected to be completely unpacked and things in place by now - we've lived here about 2.5 weeks - but its not there yet.  Slowly, but surely, it'll happen.  We took a couple of days and went to Holiday World as a family along with Jay's mom aka Nana.  Its been a whirlwind of a month and tomorrow (July 14) is our 7 year wedding anniversary.  Its hard to believe all that has happened in 7 years and its exciting to think of all that lays ahead for us.


So as you can see, 2014 has been a crazy year for us.  So much good, and such deep heartache, all within just a few months.  We have more coming up very soon that will be big for our family as well, that I will be sharing later this week.   And of course, I still want to blog more about Max's treatment and care.  He is doing well, and has an appointment coming up this week with his orthopedic doctor for a routine check-up.  Stay tuned, and God Bless!