Breathe

On Monday we had an appointment for Bennett at the University of Iowa Hospitals with Dr. Trapane, a genetics doctor. It was his yearly exam with them. They did a skeletal survey, which is basically x-rays of his entire body, in the morning, and then at noon we met with the doctor.

Once again Bennett continues to stump everyone! His bones look completely normal, nothing has changed over the past year. Praise God! They did an upper to lower segment ratio (measure from hip to toe and compare it to his arm span) and it is 1.6 with the average at his age being 1.53. At our last appointment in Iowa City his ratio was 1.9, so he is actually become MORE proportional over time. The doctor also feels that Bennett's upper-arm length looks shorter because he has big biceps:) He is our little muscle-man! They were very happy with the way he is growing. He weighs in at 23 pounds, 11 ounces (7th percentile), 32.5 inches (13th percentile), with a head circumference of 46.5 cm (10th percentile)...a peanut, but such a cute one!

We had a long discussion about the fact that the baby I am carrying now is showing the same signs that Bennett did. Dr. Trapane says that obviously it must be something that is being passed down in a recessive manner through our genes. This means that all of our children have a 25% chance of having whatever this is, and Ethan has a very good chance that he is a carrier of it. Of course, it takes just the right two people to come together to make these genes show themselves, and Adam and I are the right two people. We have the exact same genes that have a change in them that is creating this in our kids. Make sense? The stumper is, we don't know what it is! She says that the majority of children with skeletal dysplasias have a change in their bones that can be seen in x-rays. For example, the hip bones in children with achrondroplasia are actually shaped a little bit differently. THEY SEE NOTHING DIFFERENT IN BENNETT'S BONES!! :) This can change as Bennett continues to grow, but we just wait and watch...we are completely at peace with this.

On Monday, we also had an ultrasound with my OB, Dr. Hintz. This is the longer ultrasound that he typically does at 20-22 weeks. I didn't even know what to think, what to expect. When Bennett was inside of me every ultrasound we went to held grim news, and it only got worse the closer I got to my due date. This was not the case today!!!!!! Praise God!!!!!!!

The fourth ventricle in her brain that was dilated is, "unremarkable", nothing to really comment on anymore. Dr. Hintz said that it isn't even something that he would recognize as abnormal in another baby. It has shrunk down so much from 4 weeks ago.

There is still fluid around her heart, but NOT EVEN NEAR the amount that was there last time. He said the only thing that he can see that may be causing it is that one of the ventricles is a little thicker on one side, causing the blood on that side to flow through slightly faster than on the other side. There is great blood flow through it, so he is not overly concerned. He is going to continue to watch it.

Her arms and legs are measuring around 3-4 weeks behind. However, her bones look nice and straight. Everything else looks to be growing just as it should be. AND, I will only have to deliver in Iowa City if something changes with her heart.

Here are some ultrasound pictures of our precious baby girl that is a special gift from God.




Isn't she just gorgeous! :) Ethan, Bennett and this little sweetie are made just the way God wanted them to be made. I am going to be the proud mom of 3 beautiful children soon. Regardless of how short or tall they are, or what struggles they may face, I know that God has a plan for each of them.

Psalm 139: 1-18

O LORD, you have searched me and you know me.

You know when I sit and when I rise; you perceive my thoughts from afar.

You discern my going out and my lying down; you are familiar with all my ways.

Before a word is on my tongue you know it completely, O LORD.

You hem me in—behind and before; you have laid your hand upon me.

Such knowledge is too wonderful for me, too lofty for me to attain.

Where can I go from your Spirit? Where can I flee from your presence?

If I go up to the heavens, you are there; if I make my bed in the depths, you are there.

If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.

If I say, "Surely the darkness will hide me and the light become night around me," even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.

For you created my inmost being; you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well.

My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body.

All the days ordained for me were written in your book before one of them came to be.

How precious to me are your thoughts, O God!
How vast is the sum of them!

Were I to count them, they would outnumber the grains of sand.
When I awake, I am still with you.

Bennett Update

Bennett has added more words to his vocabulary than we can count, but here are some of them:
house, poop, dance, baby, mom, sock, bubbles, and peas (please)
He and Ethan race in the family room and he always says: ridy (ready)...go!

He is doing SO MUCH walking now. I can't believe I don't have a video on here yet. I need to stop beating myself up about my lack of blogging, but I can't help it. It will get done someday, right?
I would say he is walking over half of the time now. He is choosing to try to walk rather than crawl!

We had an appointment in Iowa City this morning for Bennett in endocrinology. I am a little discouraged because his doctor feels like he is becoming more disproportionate. She took his measurements, so we will know for sure when we get her report in the mail. He is at the 5th percentile for height at 31 inches and the 4th percentile for weight at 22lbs. 11oz. We will just continue to wait and watch him grow...and love him regardless!:)

19 Month Little Man

We had an appointment with Dr. Nau last week. It went great! Bennett is 32 inches tall. He is now in the 32nd percentile for height! He weighs 22 pounds, 12 ounces... still a little pip-squeak. His percentile for weight dropped down to the 4th percentile but Dr. Nau is not concerned because he is moving so much he is probably just burning additional calories. His head circumference is 46.9 cm, which is at the 22nd percentile.
All of this + all of the cool words he is saying = adorable!

Bennett is talking up a storm saying: Thank you, all done, down, duck, uh-oh, hot, balloon (ba-oom), pup, ki (kitty), ball, snack, juice (uice), si (paci), blanket, ba-ba, bite, book, mama, dada, apple, up

He continues to sign "more" and started signing "help" tonight!

We still go to physical therapy every week. Bennett has taken up to 5-6 steps independently now and Adam and I catch him trying walk away from a table or couch all on his own. He knows he wants to walk now, he just isn't quite strong enough yet.

Bennett is, I'm pretty sure, the LOUDEST child on the planet. Seriously loud. And, he is almost always at his loudest when we are in the car. Ethan will tell him he is hurting his ears and to be quiet, and we all laugh because Adam and I are feeling the exact same way. How do you teach a small child the concept of an "inside voice" when it seems physically impossible?! What he lacks in size he makes up for in noise!

Pictures to come, I promise. My homework is killing me!

Cute Pics

We LOVE going on walks with the kids, usually after we clean up supper, even if for only 15 or 20 minutes. Here is where we capture our cutest pictures of them.

Peek!

By the way, Bennett is waving now. It is adorable, if waving can possibly be adorable! We also heard back about his lab results too. His iron level was in the low end of normal, his Vitamin D was in the low end of normal, and his ferritin (which is the body's storage of iron) was at 23 with normal being at 24...the last time this was checked it was 6! Great improvement, Dr. Nau was very pleased with this.

So many posts to write..so little time! I'll get there, be patient! :)

Go Bennett!

Bennett is finally sitting up independently!!! Not long enough for me to run and get the camera, figure out where it is, grab it, turn it on, and then take a picture to prove it...but he's doing it!:) He looks so proud of himself.

Also, we found out that his x-rays looked normal again and his bone age scan was also normal! They are sending his pictures to Cedars-Sinai in Los Angeles so that they can take a look...he's famous:)

Health Update

On Wednesday we went to Bennett's one year well-child exam and then he had a bunch of x-rays taken at the hospital including a bone-age scan. Bennett hasn't been feeling very good, and it just so happened that he had a fever at his appointment which meant no vaccinations. It ended up that he has a bad ear infection in his left ear. I was actually relieved that he didn't have to get vaccines that day because I knew that he would be going through a lot later that morning. He also needed to get pricked to check his iron, nutrition, and thyroid again.

Bennett's weight was 16lbs. 13oz (less than 3rd percentile)
His height was 28 3/4 inches (10th percentile)
Head circumference was 44.4 cm (between the 5th and 10th percentile)

Despite our appointment being at exactly when Bennett usually takes his first nap and being sick on top of it, he was such a trooper. He was pretty happy during the entire appointment. We then headed into the hospital to radiology where he had a skeletal survey and bone-age scan done. The skeletal survey was a repeat from when he was first born. It is basically x-rays of Bennett's entire body. They are going to send the pictures off to the doctor that specializes in dwarfism in Wisconsin again (Dr. Pauli) to see if he notices anything new. The bone-age scan is just an x-ray of his hand and foot. From this picture they can tell the actual age of his bones- if they are younger than his actual age- that can mean that he may be blooming late, if they are the same age as he is- we are more likely looking at a skeletal dysplasia.


After we got home from the hospital I received a call from the U of I. Great news! Bennett's chromosome test came back normal. So, she helped me understand what this means. She explained it as- "Think of our chromosomes as an entire set of encyclopedias. The chromosome test that we did would tell us if an entire book was missing, probably even if a chapter in a book was missing. It wouldn't be able to tell us anything about if a sentence or letter was missing though." She said the the letters in the books are our genes. If they want to know something specific about the genes, they have to tell a test exactly what to look for. Basically, the chromosome test ruled out a few more types of disorders, but didn't lead them to a diagnosis.

I also asked her about typical arm span length because on our report the average was not given. Bennett arm span is 61cm whereas the average arm span at 1 year is between 70 and 75. So we can conclude that his span to height ratio is a little smaller than is should be. We knew this!

The last thing that her and I talked about was that Bennett will probably need to have the x-rays done again at 2 and maybe even 3 years old, BUT the later they can come to a diagnosis, the more milder the form of skeletal dysplasia. So I am hoping they continue NOT to find anything! She reiterated that they feel that he most likely has a form of dwarfism, but are hoping that it is a mild form. We shall see and we'll love him either way!

*Update* - Before a got a chance to post this, I heard back on Bennett's blood tests. His iron is still a little low so we have to continue to give him a supplement plus around 1 pediasure a day for calories and iron. His thyroid and basic scan (that shows nutrition) came back normal again. Go Bennett!

Bennett's Love/Hate Relationship

Bennett has started to dislike his baby food. I really noticed it today for the first time during supper. I made him oats with pear pineapple and then tried to feed him some sweet potatoes and carrots and he didn't eat really any of it. He kept waving his hands in front of his face and pursing his lips as I approached him with each spoonful. I started giving him little pieces of my enchilada (tiny pieces of wrap, hamburger, and rice) and he acted like he was starving.

The same went for lunch today. Ethan and I had turkey sandwiches cut into triangles and cottage cheese. I had already attempted to give Bennett baby food, but when I started tearing a quarter of the sandwich up in tiny pieces, he dug right in! Ate the entire quarter minus the crust and had around 3 tablespoons of cottage cheese.

For snack this afternoon my mom tried to give him puffs- but he didn't really want those, he wanted the good stuff. She finally gave him a club cracker and some raisins cut in half. Again, ate those like they were going out of style.

That stinker is growing up! I always like this stage when they are starting to really get into "big people" food, but it is always a transition too because it seems harder to gage exactly how much they are eating. Do all of those little bits of banana come out to as much as a #2 baby food jar of bananas?:)

I'm also noticing that he is taking after Ethan in that he TAKES FOREVER to eat and will seem to want to eat FOREVER!!! BUT, he just learned the sign for "All Done" so that is fun! He still won't do it independently, but if you ask him if he is all done and show him the sign, he will do it. It just amazes me all the kid can eat even without a single tooth in that sweet grin of his. However, I do know (from painful breastfeeding experience- ouch) that his gums seem about as strong as regular chompers- which brings me to another topic- nursing.

I feel like I am begging Bennett to nurse. He flat out does not want to, and to tell me so he bites me and pulls away, as mentioned earlier. I feel like crying and throwing him across the bed all at the same time!:) Anyway, I'm frustrated, and I think he feels frustrated with it too. I guess I will just continue to nurse him when he feels like it (which still happens to be in the middle of the night), and I think that we are going to introduce whole milk (already had Dr. Nau's permission) soon. I worry about him getting the fats that he needs for his brain development.

And I thought the second kid would be easier to figure out...