Updated

This is going to be a no pics post basically because I just don't want to download the pics form the camera. I'll be back to posting ridiculously cute pictures of the boys soon.

I called the geneticist today and was given the ultrasound and MRI results. Both came back NORMAL! Our sweet boy is gonna be fine. We will still keep an eye on the scoliosis, but we are no longer looking for other genetic stuff or spinal stuff or anything else. Thank you, Jesus!

We also had our 15 month well check today. Ben weighed in at 20.6 lbs (5%), 29.25 in (5%), and 25% for his head. Because his percentages have gone down some, we are going back for a weight check in a month. For the next four weeks, we are going to be pumping this kid full of calories. The nurse practitioner (who we saw today and L.O.V.E.) is not concerned at all, but she just wants to see that he can gain weight if we are really trying.

As far as things he is doing:

• sleeping has been better recently, we have found if we can get him in the bed between 6:30-6:45 he will sleep until 7 or later, if we are closer to 7 or later getting him to bed thea earlier he gets up
• jabbers, squeals, screams all the time
• working on losing the morning nap (oh how I HATE this transition)
• wants to feed himself everything including spooned food, which results in HUGE messes
• makes these animals sounds: elephant, dog, cat, bird (signs this), duck, cow, chicken, horse, lion, dinosaur
• follows commands
• is a helper
• plays well by himself, but loves to follow Zeke around
• says: Zeke, mama, dada, I love you, makes the ambulance sound, nnnna (banana), NA (Nana), Yaya, car, ball, amen, vroom, and probably some other stuff that I just can't think of
• is a bit michevious, he yanks things from Zeke and runs to keep them away
• all boy, loves to tackle, be outside, run, climb, etc
• reads books all day long
• very clingy to mama and likes to be held alot!
• still very attached to his paci, we are hoping to work on this
• has 8 teeth

Ben's MRI

It wasn't as bad as I thought it would be. He actually slept until after 7! We were able to get him up and just go out the door almost. We did have some last minute changes because they decided to do an ultrasound instead of MRI of hi kidneys becuase that would add 30-45 more minutes to the MRI and would mean he would do an iv instead of oral sedation. We were able to give him his meds, he actually had to take the full amount he could so we could get him asleep. Spence carried him into the room, we were able to stay in the room the whole time. I carried him back to our room. he started to wake up and was so ill during the ultrasound. Spence was able to get him back to sleep and he took about another 30 minute nap. We woke him up instead of letting him wake up on his own because by this time it was already after 11 and we had been there since 7:30. He woke up MUCH better this time, ate a whole banana and we were able to come home. He was very frustrated at home because he couldn't walk. He just kept falling over. We did lunch, and put him back down for a nap. When he woke up he was in a bit better mood. We did an early dinner and bath and he was down for the night by 6:15. I am hoping that he will sleep it all off and be our normal Benjamin tomorrow morning. We should hear something Monday. We also have his 15 month checkup at the peds so I will give a real update then on him being 15 months for those of you that are waiting for that :)

The picture above was taken this afternoon. It kind of shows how he was a bit hungover/ill through out the day.

Happy 15 months Ben!

For a special gift, we are giving you an MRI. Aren't we wonderful parents? OK, but seriously, we do have our MRI tomorrow morning. Ben's appointment is at 8, we have to be there at 7:30. He will be given an iv sedation. The MRI should last about 45 minutes. I get to go back with him and stay with him through everything. Knowing this has made me feel a bit better. Just the fact that he won't go with out me being there through any of it makes me feel so much better.
Please be praying for these things specifically:

• That he sleeps in, this kid is usually up at 5am S.T.A.R.V.I.N.G.
• He will not be fearful while there with all the different people
• He will respond to the medicine and go under easily
• That he will come out of sedation well and will tolerate liquids/foods with out throwing up
• For his parents, that we will not be fearful but that we will trust our God who loves Ben more than even we do

Genetics Update

What a great Christmas present we got today! Benjamin went to the geneticist and we got some pretty good news. Dr. McDonald didn't seem to observe anything that would lead her to think he has a genetic disorder. We are scheduled to get an MRI on January 7 to further rule out any neural tube defects, a tethered cord, or anything going on with his kidneys. He will have to be put to sleep for it, but that can't be helped. We will be going through Duke for the MRI instead of Wake Med, just because we feel more comfortable having everything going on at the same place. We are so thankful for this good news. Thank you for praying with us.

Genetics

Our original geneticist appointment was May 31. Since that just wasn't ok with me, I asked to be put on the cancellation list. Late last week, I got a call! We are going today at 11 and meeting with a Dr. McDonald at Duke. Please pray that we will remember that Benjamin was created in God's image. He is exactly how God planned him to be. We know that God has HUGE plans for our Ben. No matter what we find out or don't find out this is part of Ben's story that will bring honor and glory to our God. We pray that this will make God famous for everyone we know.

MRI postponed

I wanted to give everyone an update on Ben. For those of you that don't know, Ben caught a cold that turned into RSV and an ear infection late last week. Because of it being a respiratory thing, we have decided to postpone the MRI. We will keep you up to date on when it will be as soon as we know. It may have to be pushed pretty far back because Wake Med is changing their anesthia for MRIs to a more in depth putting out than I am comfortable with right now. If anyone has any input, it woudl be greatly appreciated. Please be praying for us as we decide what to go forward with. Thank you guys so much for praying for us. It really has been a huge comfort for us. We love ya'll.

Diagnosis

After going to the orthopedic surgeon today, we have an official diagnosis. Benjamin has congenital scoliosis. This means that he has a curve in his spine and vertabrae that are a little messed up. It also means he was born this way. The doctor said it was very minor. There is a 50/50 chance it will stay the same forever. He has to go back in 6 months to have the curve measured for changes.
We are currently praying about whether we need to move forward with the MRI or not. With it being scheduled for a week away, we have to make the decision quickly. Please pray for God to give us wisdom and discernment in this. We really don't want to put Ben through any unnecessary testing, but we also don't want to skip something and miss something that could be potentially harmful for our sweet boy.
Oh and something that's just cute. He stood from the middle of the room for the first time while waiting for the doctor. Way to go little man!

And just in case you are wondering, he has continued to be his wild self:

Climbing into the window seal/back of boys chairs

WOW, look what I can do!

This is FUN!

Pray for Ben/14 months update

Please be praying today for our appointment with the orthopaedic (or is it orthopedist? anyone?) We are going to Duke today at 1:00. We are hoping to get more info on whether he has progressive scoliosis or not. We are also hoping that maybe Duke can get us in for an MRI sooner that Wake Med.

Also, today marks Benjamin's 14th month! What a great way to celebrate, huh? Here are some really fun things he is doing right now:
*talking so much more- ball, elephant sound, meow, woof, ish (fish), eeeese (please), mah (more), dada, mama, buzzing for a bee, moo, NNNNACK (snack)
*squeals like a banshee- it's like a puppy that has found his voice (cute, yes. driving me a little crazy, yes)
*mischevious- (see picture above) also, he steals from Zeke every chance he gets, and RUNS as quickly as possible to escape (has MAJOR big brother envy)
*points to everything
*dances (video to come soon), it's especially cute in the car
*can point to his ears, eyes, nose, and belly (but only if he is in the mood)
*can squat to pick something off the floor and then stand back up
*LOVES to go outside
*getting really picky with eating, but has increased his liquids recently
*only real obsessions are his paci and eating (remember Zeke LOVED balls at this age? He doesn't really have something like that)
*wearing size 3 diapers, can wear some 12 month clothes (yay), but can still wear some 6 month shirts and most pants have to be 9 months or they fall right off
*he now has 6 teeth. Those three months of teething were actually for something. He has two on the front top and bottom and then surprised us by cutting his top molars next. Weird kid
*he puts his hands together when we pray
*does hand motions for tons of songs
*backs up to sit in your lap with a book - fave book right now is Goodnight Gorilla
*and as mentioned before, needs your prayers

Baby Got Back... Problems that is...

I know, I know... my title is completely inappropriate. But hey, I gotta find some humor somewhere in all of this

I just included this picture, for those of you who can't come to the blog with out one

If you need background please go read this post.





We went to the pediatric surgeon Friday. We saw his xrays and saw that his bottom 3 vertabrae are all out of whack. Two are fused and one is just funky shaped. The doctor also said there wasn't much "disc" between them. They are going to monitor him for progressive scoliosis (sp?) We have an MRI sceduled for December 15. This is to determine if there is anyting going on with his spinal cord. It could be that it is tethered. If that is the case he will need to have surgery. Depending on if he has scoliosis or not and the severity of it he may need surgery. So, no more real answers right now, but that is where we are. We still have our orthopaedic appointment next Tuesday at 1:00.





Our plan right now is to gather as much info as possible about our little guy and then we will analyze everything to make a decision. While it was scary to see our sons xray and see that his body is messed up, I could hear God whispering that He made him and that Benjamin is fearfully and wonderfully made. When we were sitting and hearing about a possiblity of having a major surgery with followups every 6 months for adjustments, I was busy listening while wrangling him from climbing the exam table and pulling down the curtains. So, the doctors may have been telling me that there is something "wrong" with my son, but God is telling me and showing me His truths through His word and just by watching my sweet boy.





We still covet your prayers as we are on this journey. I have appreciated all of you who have contacted me. I know I have not been so great about getting back to most of you, but trust me that I am holding them close to my heart.

Are you praying?

We are headed to Ben's first appointment at 10:30 with Dr. Phillips, the pediatric surgeon. Please be praying for our family and the doctor's wisdom. We know God loves Benjamin even more than we ever possibly could and we rest in the comfort of that knowledge.

Full Disclosure

This blog is generally a fun, upbeat one. And generally that is our life. I am brutally honest, possibly to a fault, on here. This post is not easy for me to write. I actually thought about not putting this on here, but because it is part of our family and something we are going through right now, here it is:

A couple months ago, Spence noticed a lump on Benjamin's back. He told me about it a month ago. He showed me the lump and I felt it. It was on his left lower back about the size of my palm. It felt hard, wasn't tender to touch, and no discolorations. Because I am "not a worrier" to the nth degree, I put him off. We had a shots visit 4 weeks away and thought I would talk to the nurse then. The nurse said that a doctor had to check him out, so we made an appointment for the following day. After two PA's and a doctor checked him out, they decided we needed an ultrasound. We went for an ultrasound the following day, and everything came back clear. We thought everything was great and were glad we didn't really tell anyone what was going on so that we didn't create worry. The doctors office decided we should get an xray "just to cover all our bases". We had that done Friday morning. Friday night we got a call from our pediatrician's office.


Benjamin has two vertabrae that are fused together in his lower back. His spine is also curving. We have an appointment with an orthopedic surgeon on December 7 at 1:00. We have an appointment with a pediatric surgeon on December 3 at 10:30. (no, this does not necessarily mean surgery) We will also be getting an appointment with a geneticist. The lump isn't a result of an injury, so we have to rule out anything else genetic. He will need an ECHO to be sure there isn't anything going on with his heart, an xray of his upper respiratory to check on his lungs, and blood work. Depending on what those results show, Zeke, Spence and I may have to be tested as well.
Please be praying for us. We are not worried or scared because we know we have a big God. We are praying for Benjamin to be healed, but if he is not, then we pray that God recieves glory no matter what. We are praying Philippians 4:6-7 "do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus", Lamentations 3:21-22 "But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end;" and Exodus 14:14 "The Lord will fight for you; you need only to be still."

I heard this song today while driving my boys to a park to play with dear friends. We live in a fallen, sinful world, but it is still His. It reminded me of that.

This is my father’s world
The birds their carols raise
The morning light, the lily white
Declare their maker’s praise
Of rocks and trees, of skies and seas
His hand the wonders wrought

This is my father’s world
Oh, let me never forget
That though the wrong seems oft so strong
God is the ruler yet

This is my father’s world
Why should my heart be sad?
The Lord is king, let the heavens ring
God reigns, let the earth be glad

This is my father’s world
He shines all that’s fair
In the rustling grass, I hear him pass
He speaks to me everywhere

This is my father’s world
I rest me in the thought