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........

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 table...it 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!

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.

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.

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!
Autumn

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 http://www.youtube.com/watch?v=8OjMjYdAEl4