Thursday, December 29, 2011

Full Circle

Anyone who watches Big Brother knows that every season, someone gets stuck wearing a ridiculous outfit.  Several years ago, Brian had the idea that this could be carried over to the Coffey adult dirty Santa game.  He found a costume and wrapped it.  The rules of the package were that it couldn't be opened until the end of the game, it had to be used for an hour after the game, and that it had to be put back in the exchange every following year.  Of course, this gift was fought over in the original exchange because of the mystery associated with it and has been a running joke every year since then.  Wouldn't you know, the gift came full circle this year.  Scroll below.......

The Chicken Suit

The Helmet Adventures Continue

Tyler got measured for the helmet and it was submitted to insurance.  Surely insurance will pay since we have met our out of pocket max and our neurosurgeon prescribed the helmet...right?  WRONG! A clause in our insurance policy and we are denied :( Our dilemma was do we fight the insurance company with an appeal when this is a time sensitive treatment or just suck it up and pay for it ourselves.  We decided to just go ahead with treatment because we could put it off to do the appeal and that could also be denied.  On a happier note, Tyler had his tear duct procedure done last Friday.  He did great and no more goopy eyes :)

After his procedure-still smiling!

Merry Christmas

I hope everyone had a Merry Christmas.  This year was the first year we sent out Christmas cards.  We took some pics of Tyler in his crib and the caption read: Merry Christmas from our crib to yours!!  Here are a few of our faves.

We also took the boys to get pictures with Santa.

Monday, December 12, 2011

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:

Tuesday, November 29, 2011


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?!


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!

Monday, November 7, 2011

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.
 Go, Ty! Go!

Monday, October 31, 2011

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.

Monday, October 17, 2011

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.

Saturday, September 17, 2011

Farewell to my little bitty itty bitty baby!

During my pregnancy, my OB told us to stock up on preemie clothes because baby was so small.  The first time I held up an outfit, I was amazed.  It looked soooo tiny! My baby is going to fit in this?!  I couldn't fathom something so small.  For those of you that don't know, we chose not to find out the sex of the baby.  Finding unisex preemie clothes=impossible.  We waited until after Tyler was born and thank goodness for friends and family who showered him with tiny outfits.  He was 4lbs 13 ounces at birth and yesterday, he weighed in at a whopping 11lbs 7 ounces!!! The weekend before last we boxed up his newborn clothes which he finally outgrew at 5 months :) It is funny that the same scenario occurs daily almost word for word
Stranger: Awww, what a cute baby. How old is he?
Me: {Insert age at the time}
Stranger: Oh my gosh, he is so tiny!
Me: Yeah, he is a little guy.
Stranger: How much did he weigh when he was born?
Me: 4.13
Exchange smiles, walk away.
This is funny to me because they hear his age and think he is little, but to me he is soooo big compared to this little lemonheaded boy we cuddled in the NICU:

In an earlier post, I mentioned I had asked my mother in-law to make a blanket with some of our favorite preemie outfits.  Mammaw Coffey is the craftiest woman I have ever met and this is what she did with those little bitty itty bitty baby clothes:

Tyler loves it, and so do I!!  Thanks Mammaw :)

Friday, September 16, 2011

Testing~Testing~ One, Two, Three.....

Since I last wrote on the subject of appointment updates, I have had the busiest kid on the block! We got the results back from the EEG=normal :) We took another short trip to Indy to see the neurosurgeon.  She gave us another opinion on the helmet issue.  She suggested that we do positional therapy super aggressive style.  Basically, put him on the opposite side and keep him there at all costs. She even suggested velcro, safety pinning and stapling to the I am NOT kidding! Another thing was I had to switch sides when feeding him.  He has to be fed sideline which means completely sideways.  I am right-handed so I has holding his head with my left hand therefore putting all the pressure on the left side of his head adding to the problem.  She worried that the added weight of the helmet would hinder his development and she added that most insurance carriers wouldn't cover the helmet. On the spine issue, she wants to do another MRI since the first one was done at 50 days old.  Fixing the spinal issue, could alleviate the kidney issues.  At the end of October, we will do the MRI and see her again.  At this time, she can revisit whether or not he needs a helmet and also decide if surgery to release his spinal cord is needed. 
Wednesday, we spent the night at the hospital in Evansville so a sleep study could be performed.  We will get the results back in about a week for those.
Thursday, we had another swallow study done.  We have recently started cereal and wanted to make sure their were no issues with him aspirating.  We also were questioning whether he had matured enough to feed in a "normal" position(no sideline) without aspirating.  We found out that he is fine eating cereal and he can now feed sitting up!!! Awesome news! 
He is also doing great with all his therapies.  He is getting better head control, reaching for things, and keeping his hands open more of the time.
Thanks for all the prayers, support, and encouragement! 
Tyler is a rockstar and he impresses us with new tricks daily :)

Monday, September 5, 2011

Kammy's Kause

Introducing the 4p- families

Kammy's Riders with the kids

  Kammy's Kause is the largest fundraiser for 4p- research and awareness in the U.S.  Tyler's syndrome is Wolf-Hirschhorn and is the main one included in this.  4p- means that there is a deletion (-) on the petite arm (p) of the 4th chromosome (4). Soooo, it goes like this: Jared has a daughter named Kamdyn who was diangnosed with 4p-.  Jared is also in a band called Breakdown Kings.  Years ago, he started a music festival and dubbed it Kammy's Kause that has grown bigger and better every year.  This festival lasts over 2 days and has many midwest bands who come and volunteer their talent and time.  He has since also added Kammys Ride.  This event was in Fortville, Indiana which worked out because we were up in Indy all week for appts and it was only 45 minutes away. 

This was such a great event and 11 other 4p- families from around the US had made the trip.  It was a great experience to meet other families and connect with people that "have been there".  We laughed, cried, and danced together.  Jared also did a balloon release and tribute song for all that 4p- kids that have passed away and there was not a dry eye in the place.  It was great to see such a diverse group of people coming together to support a cause so dear to us. 

Great music-Great fun and I can't wait until next year!!!!

Monday, August 29, 2011

Game Time

My sister-in law Nicole called and mentioned that she was working on getting us Colts tickets if we wanted them.  Of course we did! We ended up getting the tickets and this was an awesome night for many reasons.
1) This was such a stressful week and it was great way to finally relax and enjoy ourselves.
2) Tyler stayed with Brians parents and we got some great time with Peyton.
3) This was my first NFL game
4) Dallas Clark, need I say more?!

They were AWESOME seats and we had a blast.  Thank you, thank you, thank you to Michael and Nicole!!!!

Life's Tough~Get a Helmet

Neurologist appointment:
We shared our concerns about some of the behaviors we thought might be seizures.  The doctor ordered an EEG which we were able to get done that day.  We should get the results back in a week.  I hate waiting.  She also was concerned with the shape of Tyler's head.  He favors one side and we have working with the Physical Therapist to try to correct this since he started therapy.  Unfortunately, our little guy is very stubborn and has found ways around all our tricks to get his head the way HE wants it.  She recommended helmet therapy.  It would correct the shape of his head.  We were offered this option a month ago by our pediatrician but we wanted to wait it out to see if it would get any better.  Since it doesnt look like that is going to happen and we have a small window to do this we agreed. 
Helmet therapy is technically considered cosmetic and therefore sometimes not covered by insurance.  The shaping of his head won't affect brain development but will affect brain growth.  From the beginning, Brian and I agreed that if something was recommended for Tyler and it made sense we would do it.  We would never use cost as a determining factor.  This being said, I honestly laughed out loud when the receptionist explained that this tiny little helmet with foam inside would cost $2,000! What can you do but laugh?! There is a chance that insurance will cover it so we are keeping our fingers crossed.  So boo for the helmet but hooray that we will be getting this fixed.  We will just roll with it and try to make the best of the situation.  We are already brainstorming halloween costume ideas with the helmet in mind: colts player, q-tip........

Wednesday, August 24, 2011

Riley Hospital Take 2

Hooray for Tyler :)  Today, we made the trek downtown for the kidney function test.  Another catheter, an iv, and more pictures.  Tyler was taped to a table for 45 minutes while they did this test.  Our funny little guy actually fell asleep after the catheter and iv were in (he didnt cry a bit).  I will have to post pictures when I return home of him asleep super taped to this was quite a site.  The results were that one kidney was functioning at 44% and the other 55%.  Both should be at 50% but the test has a 5% give-or take error so our urologist was very happy with the results.  She also explained that we should keep him on his daily dose of amoxicillin to prevent kidney infections.  The kidney reflux is not hurting him as long as there are no infections.  If he were to start getting infections, the reflux could be corrected with surgery.  The surgery is "easy" enough but we will just keep praying that Ty stays healthy and no surgery will be needed.  She did decide that we needed to be seen by the neurosurgeon for his spinal cord and made the referral for that and they should call us in the next week or so to set the appointment.  SOooo another ultrasound and appointment in 3 months to watch the kidneys and off we went :) 2 down and 1 to go= neurologist appointment tomorrow.  Go, Ty! Go!

Tuesday, August 23, 2011

Day 1: Riley appts

The day started off at 10:30am with an appointment with Doctor B.  He is a developmental pediatrician and I LOVE him.  The first time he saw us, he spent over 45 minutes with us.  This time, it was over an hour.  He listens to all our concerns and is so thorough.  In a day where sometimes you feel like just a number at a doctors office, this man acts as if you are his only patient all day.  Some of his worries are Tyler's weight gain.  Although he is gaining weight, he is not going up on the WH growth chart.  He has us upping his caloric intake to hopefully pack on the pounds. Tyler will be five months on Saturday and is 10 1/2 pounds.  He recommended doing another swallow study in a month to check and make sure that Tyler is still not aspirating while he eats.  He wants us to get a sleep study done because Tyler is gasping in his sleep and he wants to make sure he is getting enough oxygen. 
Next, were the tests.  Ty had a renal ultrasound done to check his kidneys which was uneventful except that he had just fallen asleep and the tech moving him around woke him up.  Next, we had urodynamics (bum, bum, bummmmmm in the scary voice).  This test requires Tyler to have a catheter inserted and they fill the bladder with contrast.  They are able to check how much his kidneys hold before voiding (peeing) and check his kidney reflux while taking xrays.  They also stick a thing up his bum to measure which muscles he uses while peeing.  I was dreading this test all day.  Mind you, it's 2:00 and Tyler still has not had a nap. So the scene goes like this:
Tyler is laying on a xray table.  They ask me to hold to his legs.  Brian is up by his head talking to him.  There are 3 nurses in the room.  Another women comes in and her job is to help relax the children.  She has an ipad and asks if Tyler likes music or movies.  He loves music and she goes up by his head and starts playing some tunes.  Tyler starts cooing and flirting with this pretty little lady.  The nurse is getting the test ready and I am holding his legs when I start to feel warm all over my shoulder and shirt.  The nurse screams ,"Ahhhh!" and covers my peeing son with her hand.  I am in shock but we all totally cracked up and it lightened the mood.  Tyler didnt cry but his eyes got as big as saucers when they started the testing.  He is such a trooper.  We saw the urologist after the testing and found out his kidney reflux went from Grade I to Grade III in 3 months....not good.  Kidney reflux occurs when the bladder empties and instead of urine leaving the body through the ureters, some of it refluxes back into the kidney.  This can cause kidney damage and eventually kidney failure.  Additionally testing has been scheduled for Wednesday to check kidney function.  Little buddy has to have another catheter put in for the testing and I pray it goes as smooth as this last one , minus me getting peed on.  She also wants to speak with neurosurgeon about his spinal cord.  I got an explanation about this also: a normal spinal cord ends at between L1 and L2.  Tyler's ends at L2.  A spinal cord below L2 is considered a "tethered cord".  This could cause problems with kidneys and leg function from what I understand.  Sooooo, Wednesday we will get the kidney function test done and then go back to the urologist office to go over the test and see what the neurosurgeon has said.  I will update after testing later in the week.  I feel as if this update is one huge paragraph with no organization but it was the easiest way for me to regurgitate all the information I could remember.  Please continue to keep Tyler in your prayers but also all the children at Riley.  It breaks my heart when I see some of the things these kids are going through.  My sweet baby has given me such a new perspective on life.  I am reminded daily of Gods blessings and thank him for allowing me to be a mom to such an awesome little dude.  I also want to give a shout-out to my fantabulous husband.  Many aspects of our marriage has changed and there is an element of stress that def. wasnt there before.  He is such a rock for our family and I am so grateful for such a supportive and loving husband.  I <3 you B!!!!!
Until next time~
Rock on.

Tuesday, July 19, 2011

Welcome to Holland

This is on the side of our fridge. I remember filling it in at the beginning of every month.  I used it for appts, lunch dates, dinner dates, etc....  Last night, while walking past,  I took notice.  I mean-REALLY took notice. For the first time it hit me.  The month was March and the last thing on the calendar is 6pm-hospital.  We had absolutely no idea how much our lives were about to change.  I got sad.  I got emotional.  I cried.  It felt good. I cried for us-I cried for Tyler. I think every now and then, you need a good cry.  It's a release of all the crap.  The important thing is not to stay in that place of sadness. of pity. of crap.  I got my cry and now I'm over it.  I was reminded of something another mom of a WH child shared with me.  It's written by a mom who is often asked to describe raising a child with a disability and it goes like this:
When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland. by Emily Perl Kingsley

So for now friends, Tyler is doing great and I must remember on a daily basis to enjoy HOLLAND.

Sunday, June 26, 2011

3 month update

Father's Day nap
Hello all! Sorry it has been so long but you know how it goes; life happens.  I just put Tyler down for a nap and Brian is taking Peyton back from our visit so I am ignoring the dishes in the sink and sitting down with a cup of coffee to finally give an update.  It has been a busy week as we have had Peyton since last Saturday which makes never a dull moment!  He has become quite the daredevil and I thank the Lord at the end of each visit when he goes back to his mom without any new bruise, bump, or trip to the ER!   I can't believe he is about to start kindergarten.  It has always seemed so far away but now it's here. We will get him one more time for two weeks before school starts and we will have to start doing the every other weekend deal.  This will be an adjustment because we have gotten him for 9 consecutive days a month for some time now. We got to spend some good time together this week which included numerous games of Candyland, bike rides, and the Wii.  My mom even watched Tyler so Peyton and I were able to take some time in at the pool with family which was nice.  Brian's parents came down for a visit and they couldnt believe how much bigger Tyler is.  He is up to a whopping 8lbs 11 ounces.  He is out of his preemie clothes and into the newborns..woohoo!  I gave Pat (Brian's mom) some of my favorite preemie outfits and she is going to make a little blanket for Tyler with them. 

Playing candyland before bed; Tyler was not impressed.
Tyler finally got his swallow study done Monday.  Since birth, feeding has been rather inconsistent.  Sometimes(usually at night when he is really sleepy) he feeds smooth and easy.  Many of the times, it's like he thinks too much and breathing, sucking, and swallowing becomes crazy.  He was choking at least once per feeding and Brian and I have been pushing the issue of a swallow study for some time.  Finally, after some exaggeration and a tiny bit of manipulation on my part one was ordered.  This past Monday, we went to the hospital and they put barium in his bottle.  He was placed behind some sort of x-ray machine that showed a constant picture of his throat, mouth, etc.  He started feeding and pretty quickly the feeding therapist told me to stop.  He was aspirating and the milk was going into his lungs.  The feeding specialist told me that he has probably had treated pneumonia this whole time. Since he has been on amoxicillin for his kidneys, it had kept the infection at bay.  I felt sick to my stomach that this had been going on for so long.  This taught me several things.  1) Trust my insticts. Just because I don't have a medical degree doesn't mean I don't know when something isn't right with my child.  2) Be persistent and insistent when dealing with medical personnel.  We were able switch positions to what they call a "elevated sideline" to feed and ensure that none is going into his lungs. This position requires him to be completely on his side and slightly elevated.  Hopefully, as he matures and increases muscle tone this is something that will correct itself.  It could pose some issues in the future if it doesn't so we are crossing our fingers.
First Steps did their evaluation and we have put together our "plan of action" for the next three months.  This included a list of goals we wanted for Ty and then how we were going to accomplish them.  The team they have assembled to aid us in this will look like this:
Physical therapy- 1x a week for 45 minutes
Occupational therapy- 1x a week for 45 minutes
Speech therapy- 2x a month for an hour
Developmental therapy- 2x a month for an hour
Audiologist visit- 1x a month for 90 minutes
The process for getting his hearing aids is done and he will get his magic ears July 5th.  FINALLY!

Tyler is doing great.  He is doing more talking, smiling, and developing quite the flirt personality :)  We are excited to get the therapies started and see him grow and progress in his development. 
Love to you all!

Sunday, June 5, 2011

Everything's Gonna Be Alright

When reading about WH, it said that some children don't make eye contact or smile.    Some children never talk.  I am trying to take what I read with a grain of salt but it is sometimes difficult and depresssing.  This week, Tyler has taught me that he is not WH.  He is not to be labeled.  He doesnt have boundaries and he is AWESOME!!!! While doing tummy time, he rolled over to his back.  I couldn't believe it and thought maybe it was a fluke.  Since then, he has shown off his new trick to Brian and my dad on two separate occasions.  He has also started making eye contact and smiling AND "talking".  This all prettty much happened on the same day. The whole talking thing is also impressive considering he still doesn't have his hearing aids. I couldnt help but allow the tears of joy to fall as I fed him his bottle after all this occurred.  I looked down at my perfect son and realized it will all be okay.

PS Attached above is a video and if you are accessing from a mobile device, you may not be able to see it so check out

Monday, May 30, 2011

2 Month Update

Tyler had his 2 month check-up Friday and got his first round of shots.  He is up to 7 lbs 9 ounces and 20 3/4 inches long.  On the regular growth chart, he is in less than the 1st percentile.  Fortunately, there has been a growth chart made for Wolf Hirschhorn children and Tyler is almost exactly "normal" in height, weight, and head circumference for his age.  He has been a busy little fellow with all his doctor appointments and we are trying to see all the different specialists to either fix or elimate any problems he may be having.  Here is where we are at....
Ears: Tyler had originally failed the newborn hearing screen and was referred to Easter Seals to see an audiologist and do a more in depth test.  After the test, it was discovered he has severe hearing loss in both ears.  He doesn't hear below 75 decibals.  A normal conversation is about 50.  We were then referred to an ear, nose, and throat doctor to make sure there was nothing structurally that could be fixed to improve his hearing.  The ENT didn't find anything and gave the audiologist the go-ahead to start process for hearing aids.  He has been fitted for ear molds and those will come in about 3 weeks.
Kidneys: In the NICU they found fluid on his kidneys.  They put him on daily dose of amoxicillin to prevent any infections.  Follow up ultrasound was done 3 weeks ago where they still found a small amount of fluid.  They also did a test where they put a catheter into his "business" and shot dye to check for kidney reflux that could lead to kidney failure.  There was a small amount on one side but nothing too concerning.  Follow-up ultrasound scheduled in 3 months.
GI- He is on Zantac for reflux and will be seeing a GI doctor in about a week.
Spinal Cord-  An ultrasound was done a couple weeks ago and was found to be abnormal.  While at Riley, they did an MRI and the cord was found to be low-lying and abnormal.  I am supposed to hear back from neurosurgeon tomorrow on what his course of action will be.
Eyes- We see the eye doctor in a week.
Heart- He has no known heart problems as the echocardiogram in the NICU showed normal results :)
Brain- Cysts in the frontal lobe believed to be associated with the Wolf-Hirschhorn.  No course of action to be taken.
First Steps- He has his intitial evaluation on June 15th.  A physical and occupational therapist will be coming to the house to check him out.  The next day, his case worker will be coming to put together a plan of action that could include many different therapies that include speech, physical, and occupational.  Due to his hearing loss he will most likely start speech therapy as soon as 3 months old!  First Steps is also paying for his ear molds, hearing aids, and batteries.

Tyler  is growing and eating well.  He is a happy baby who only cries when he is hungry.  His favorite thing to do is play in his baby gym and bat at the dangling elephant.  He is such a blessing and we are so lucky to have him.  I am so excited to see his progress and watch him grow.  Even though the medical bills have made it above $10,000 and at times all of this can be overwhelming, we have faith that God has everything under control.  Please continue to pray for not only Tylers health, but that Brian and I can maintain that faith and be guided in the many decisions we will be facing regarding finances, treatments, and advocating for our son. 

Here is a website that has more information about Ty's syndrome and his story along with other families of children with WH.