Paging Dr. Awesome

Friday we went to Louisville to have our appt with Dr. M.  We were hesitant and not sure what to expect and let me just say that we were pleasantly surprised.  This man was wonderful! Not only was he super nice but after talking to us for a bit, he said, "I should be very familiar with Tyler's symptoms, I used to eat with Dr. Hirchhorn every Friday when I was in New York." We were amazed and KNEW we made the right decision in switching doctors.  In case you were confused: Tyler's syndrome is Wolf-Hirchhorn and Dr. Kurt Hirchhorn is one of the doctors who identified the syndrome.  Dr. M told us that Tyler indeed had a tethered spinal cord.  He wants to do surgery but not until after Ty is a year old.  He also scheduled a MRI with contrast for the cyst on his spine.  This will give him some additional info about the cyst.  He informed us that the tethered cord surgery is relatively easy with minimal risks and a small incision.  The cyst is located further up the spine and if he decided to remove it the incision would be much larger.  Also, because of the location of the cyst there are more risks involved in removing it.  After the MRI, we will know if we should just watch it or if it something that needs to be removed when we do the tethered cord surgery.  The dang helmet was brought up again.  He strongly advised that we get the helmet.  I asked if it was really that bad or if I was in denial because I am his momma.  He jokingly told us we need a helmet intervention.  So, off we go today to get measured for the helmet.  After the appointment, Brian thanked him for being so thorough and explaining everything to us.  He was so gracious and told us it was nothing.  I told him that so often it seems like doctors are in and out in ten minutes and Brian and I are left going, "What the heck just happened?" He again told us it was job and since we chose that hospital and him as our doctor that-"We were family."
Since having Tyler we have had to deal with many medical professionals.  Most are good.  Some-not so much.  Then, there are the select few who are AWESOME.  They go the extra mile and make you feel like people and not just a number they have to plow through to make it to the end of their day.  I know that God led us to to this doctor and am so thankful that doctors like this still exist. 
If you wanna be reminded on how we were led to Dr. M-read this:
http://gotygo.blogspot.com/2011/10/mcmuffin-anyone.html

Riley

We had appts at Riley on Monday.  Tyler had an ultrasound and the urologist said there were no changes.  Then, we met with the developmental pediatrician, Dr. B.  I love this man more every time we see him.  He is my favorite doctor.  We told him about the changes in Tyler we saw while he was on the steroids.  He was doing things he had never been able to do before.  Prior to the steroids, Tyler didn't have the muscle strength to reach out and grab an object.  He was doing this and more much to our amazement considering he had lost weight in the hospital.  Dr. B agreed that the high dose of steroid was what had caused this.  It isn't an option for Ty to be on these but we questioned if there was any other options that we could consider that would have the same effect.  He told us he would do some blood work up on Tyler's hormones, thyroid, etc. If it came back that he had deficiencies in any certain area, we could look at replacing those hormones such as growth hormone therapy or some other options.  He is going to do research on growth hormone therapy on children with Wolf Hirschhorn Syndrome.  We would consider options not based on the fact that we want Tyler to be taller or bigger (because we don't) but if it would be beneficial in helping with muscle tone.  We will get the results of the blood work early next week.  We also discussed Ty's weight gain. He continues to trend downward on growth charts in the area of weight.  We already boost his formula to add calories but are now boosting it even more.  He basically told us that if this didn't work then we would have to start considering other options which is codeword for feeding tube.  We will revisit this when we see him in April so we have about 4 months to beef this kid up! Please pray that Tyler will gain some weight.
In other news, we were able to get the appt in Louisville with the neurosurgeon moved up.  We now go December 7th. 

PS Can you believe Tyler is now 8 months old?!

~Thanksgiving~

We spent this Thanksgiving at my Aunt Susie's house.  There were about 30 people and it was great seeing everyone.  Tyler got passed around and loved being the center of attention.  Then, we headed to Indy to do Coffey Thanksgiving.  I could continue this post by getting really deep and sappy about all the things I am thankful for this year-but I won't.  I will leave you with one thing I am thankful for ........

All the little things in life

especially this one.

Sick Bug

2 weeks ago we had an appointment with the pediatrician to get a flu booster.  Tyler had a cough and had not been eating right for the 2 days prior.  When we went to the appt, the doctor became worried about his oxygen levels and sound of his lungs.  Her recommendation was to go be admitted to the hospital.  Tyler was put on iv fluids and breathing treatments.  All tests came back negative for RSV, flu, pneumonia.  Wednesday morning he spiked a fever.  They started him on iv antibiotics and steroids.  Thursday morning he was so pale and still not eating.  I was starting to get really worried.  He finally turned a corner late Thursday night and started eating.  His lungs began sounding better and we were discharged Friday afternoon.  Tyler was a bear for the next week while being on the steroids, breathing treatments, and steroids.  Poor guy couldn't sleep and his stomach hurt because of the antibiotics.  He is finally getting back into the swing of the things.  Unfortunately, he lost weight that had taken about a month to gain.  A big thanks to everyone who called, visited, and brought us food-we appreciate YOU!!!

Happy boy-ready to go home!

Go, Ty! Go!

We got an appt to see Dr. M, but it's not until Dec. 21st.  We are praying that we can get in earlier and get the surgery scheduled before the end of the year.  We have met our out of pocket max for the year with insurance and wouldn't have to pay for the surgery.  It would be GREAT to get it done and not have to wait until next year and start it out with a huge medical bill.  The dr. only sees pediatric patients on Wednesday so my job is to call every Tuesday to see if their is a cancellation and we can get in earlier.
On a happy note. Tyler is in a halloween costume contest to win an IPAD.  The website is doing this contest to raise awareness about Wolf-Hirchhorn and our wonderful children.  The Ipad is a great therapy tool and Tyler could really use it.  So go vote for Tyler the little green monster at the site below and meet some really awesome kids on the site.

http://www.wolfhirschhorn.org/halloween-contest/

 Go, Ty! Go!

McMuffin anyone?!

 Luke 11:9
"So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.

Pastor Bret has been preaching about prayer for several weeks.  He has been putting emphasis on the knocking part.  So often, during a fleeting prayer we ask God for (fill in the blank).  He suggest really focusing and praying fervently and seeking God.  Don't do a knock and run sort of prayer.  Bang at the door with your prayers.  He even used a door on stage to show his point and the man literally BEAT down the door; I mean he really went postal on the thing.  He also tells a story of a church member who is a real prayer warrior.  She prays for everything.  One morning, on her way to church she didn't have time to stop so she prayed to God for a breakfast sandwich.  When she got to church, a man approached her with and asked her if she happened to want a breakfast sandwich because he had an extra one! Random but true.  I want clear cut answers like that.  I NEED answered prayers like that.  I'm the kind of girl that doesn't read between the lines.  I have to have things spelled out for me.  That is the problem I sometimes have with praying.  There have been no definite answer when I pray for answers or guidance.  Last month, Brian and I met with a neurosurgeon for Tyler and were to have some tests run to decide on surgery.  After our initial meeting with the neurosurgeon, we really didn't have a good feeling about this doctor for several reasons.  We decided to pray about guidance in what we should about the doctor situation until we were to see her again and do the MRI which was about 6 weeks later.  We prayed on this daily.  I also decided to do a little research.  I found a pediatric neurosurgeon in Louisville that I liked- Dr. M.  I showed him to Brian.  He listened but then repeated our plan to pray about it and see what the tests and Riley doctor was to say.  So we kept praying and waiting.  The week we were to go to Riley I had another idea.  Why not ask other WH parents if they have had any experience with the spinal problem and get some more info and input.  As a benefit of being a member of the 4p- support group, I have access to a listserv.  The listserv is an email database of all other members (about 250 worldwide).  I send out an email and it goes to all members and anyone can respond.  The listserv is awesome and we use it for medical questions, insurance problems, and just keeping in touch with other Wolf-Hirschhorn families.  I sent out the email and within a couple days had 2 separate families that had the same spinal issue.  We e-mailed back and forth about the condition and benefits they have seen with the surgery.  They also both gave me the name of their doctor....both children had been operated on by Dr. M.  I still get chills thinking about this.  I told you at the beginning I need things spelled out for me and so it was.  I think everyone needs an answered prayer like this.  One that when it is answered there is no other explanation other than God himself.  I have heard a saying that ~Coincidence is God's way of staying anonymous~.  I see it as the exact opposite~Coincidences are God's way of letting himself be known. 
We did do the MRI and the Riley doctor did recommend surgery.  They also found a cyst on his spine.  We are awaiting an appointment to see Dr. M.

Just Breathe

The only way I can describe this last 6 months is a BLUR.  I have been hormonal.  I have been angry for no reason.  I have been stressed out about things I have absolutely no control over.  I feel like a child who has been thrown in a pool without her floaties on.  I have been thrashing and kicking.  I have been screaming and choking and gasping for air when it hits me: Put your feet down you big dummy, you're in the shallow end.  That is the message God has been trying to send me for some time now.  I'm ready to listen.  Brian and I spent a whole day the weekend before last with the couples in our life group.  We had some deep discussions and are ready to hit the play button on where we want our lives to MOVE. We made a mission statement for our family and a list of goals we want to accomplish.  Then, we all drove to a farm out in the country for the rest of the day.  I soaked in the sun and cherished the calm. 

I carved a pumpkin and took on minute to win it challenges just for FUN. 

We sang in front of a bonfire and praised the God who has control over all things and then we made my favorite snack of all times SMORES. Since then, we have joined AND went to the gym.  We have tried to worry less and trust God more.  We are praying, loving, and LIVING. 

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”
― Mother Teresa

PS. Keep Tyler in your prayers.  We go to Riley next Friday for the MRI and appt with the neurosurgeon to see if she wants to do surgery on his spine.