Fun Outings

We have spent the past couple freezing cold Saturday afternoons (when we didn't have birthday parties to go to!) going on little indoor adventures around town. The first was a Train Exhibit Show where we got to see lots of fun stuff related to model trains. And the second was a Wild, Wild Rumpus at the Downtown Library where we got to celebrate everything related to one of our favorite books, "Where the Wild Things Are". The boys enjoyed themselves a lot at both!!

WOW! Watching model trains whizzing by!

It's Thomas!!!

Waving hi while riding a train that you power by pedaling your hands!

Look at him go!

Bennett wishing he were old enough to ride.

Playing at a train table.

~

At the Wild, Wild Rumpus!

My little Wild Thing!!!

Making his own crown just like Max's!

Proof Bennett was actually along for the ride!

Jack hugging the Wild Thing

... and pulling his tail!!!

We got to hear a dramatic reading of "Where the Wild Things Are" by some actors with Actor's Theater! They did an awesome job and the boys loved it!

All 3 of them!

Results of Bennett's Tests

Bennett walking at the mall! YAY! Gooooooo Bennett!!!

Well, it turns out that all his tests have come back negative... still! We are so relieved about all of the results! However it still remains a mystery. There is obviously something going on with him because not only is his head small, but now he is super small all over. He has been hit with the diagnosis of "Failure to Thrive" which is a scary term to me. But more on that in a little bit.

I realized I didn't ever give the full scoop on the MRI results once I talked with Dr. Hinkebein, our pediatrician. He was obviously happy that there were no visible signs of brain injury from birth, but he wasn't so quick to dismiss any issues as the cause. He still seemed very concerned that his head hasn't grown since his 12 month appointment and was anxious about what the geneticists would say.

So we went to see the genetics doctor last week and got the results back yesterday from all his bloodwork and x-rays. All normal again, praise God! They are still concerned though, like everyone else, because of his head size, his hypotonia and they brought up his tiny size over all. The pediatricians put him in the 30th% I think at his 15 week appointment so it wasn't ever an issue to me, but his nutritionist put him in the 10th% and now the geneticists put him in the 5th-10th% and also said he has failure to thrive. They seemed very concerned about this. They had taken his x-rays to discover his bone age which was normal and took all sorts of bloodwork for different hormone levels, etc, including the growth hormone. Everything checked out. But he was in the 75th% at his 9 month appointment and is now very low so that sends up big red flags that they can't get to the bottom of.

So I guess we'll get the nutritionist back out here to see what else we can do! It is very scary to think he has stopped growing, or at least is growing very little. The geneticists also said we need to get into the neurologist and, thankfully, we have an appointment in March. One step at a time we are hopefully helping our son and getting to the bottom of all this. Thanks for all your prayers, they mean so very much!

Bennett Is Sixteen Months

Bennett is getting to be such a big boy! He is walking some now (although he still walks like Frankenstein) and he prefers to crawl much of the time. We are thrilled he's finally gotten up the confidence to walk, even unbiddingly! He is getting more and more sure of himself every day! Just this week, his Pops has been working with him and getting some great results! Thanks Pops!

Bennett had an appointment with a Geneticist doctor last week and we found out that the first round of bloodwork they ordered for genetic testing all came back negative, which is great news. At the appointment, they ordered a lot more bloodwork (which was torture to watch my son go through and he's had nightmares every night since... poor little guy) as well as some x-rays. All of this is to determine (and hopefully rule out) some other genetic causes to his microcephaly. The doctor seemed encouraging saying he didn't think the chromosomal tests would come back showing anything, but he remained stumped and concerned with the fact that his head has not grown since his 12 month appointment. Please join us in praying that not only the genetic results come back negative, but that his head will grow. It is a huge answer to prayer that Bennett is finally walking consistently! This will open many doors to both his physical and mental development, so this is a huge weight off our shoulders.

He has also started talking more. He repeats lots of words and says a few words. He says "this" as he points to anything he wants. It's his version of saying, "I want this and I want it now!" It is also apparent that he understands so much of what we say now! I can give him lots of commands and he definitely knows what I'm saying, although whether or not he obeys is an entirely different matter! Have I mentioned he has a serious rebellious streak? It's hilarious, I have to turn my head away so he doesn't know I'm laughing when he shoots me a mischevious look and throws his milk off the highchair... for the hundredth time! That boy is going to be trouble!

Bennett has started to really play with his brother now and he just spends half the day laughing so hard at all the silly things Jack does to and with him! It's the cutest thing in the world to watch!!! I just love to see their relationship developing, it's so precious! Bennett is a true thrill-seeker. He loves to ride on toys, be thrown in the air by Daddy, climb on anything and everything. Other than his extreme caution shown in walking, he is all rough and tumble boy! Here's our cutie!


Nothing's more fun than playing in a box!

A few photos taken by Jack

Yes, more matching outfits... blame Nana Peg for this one! My cute boys playing together!

The first snow of 2012! We haven't had much snow this year, but Jack is hoping we'll be able to build a Frosty the Snowman again this winter!

Bennett LOVES to point to these pictures of his family! He will crawl up on the couch to get closer!

Playing with the toolbench...

Spaghetti for dinner!!! Oh MY!

We still usually have a dramatic moment or two every day! Love this little boy!!!

Bennett's MRI

I just have to start out by saying THANK YOU to everyone who has been praying for our little Bennett. We have felt it and know God has been so good to us. Thank you also to everyone who has called us, emailed us and texted us. We feel so blessed to have so many wonderful friends and family who truly care about Bennett's health and well-being.

His MRI went pretty well yesterday, although it was a taxing day on everyone. The day before, the hospital called me and asked if we'd like to move the procedure up from 2:30pm to 7:30am and I was THRILLED! I didn't know how it would go with Bennett not getting to eat all day, so I was grateful. We had to get there at 6:30 and they gave him some medicine that made him act drunk. He was so funny, giggling at absolutely everything! He started to get worried when they were holding him down to give him the IV. It was really hard for this Mommy to watch my baby cry as they poked him and held him down. Eventually they got it in and whisked him away. I was a ball of nerves all morning.

He was back there for about an hour. When he came out, he was crying and screaming a lot. I think he was scared and confused as he was trying to come out of the anesthesia. There was nothing I could do to comfort him, he acted very upset. Eventually he drank and ate some and that made him a little better, although he was still pretty fussy. Once we got him home and eventually in bed, he went on to sleep, which is what he needed. When he woke up, he was pretty much his precious, happy old self again. I was so relieved.

So today, I got a phone call from a nurse from the Pediatrician's office that just said his MRI results were normal. WHAT?!! I tried to clarify, but all I could get from her uncaring lips was that they were "normal". I asked for clarity by saying "So the scan didn't show any abnormalities at ALL?!!!" And she said "no". I went on about how this was such great news and she said nothing. So that's all I had to go on, but that was enough to REJOICE!

Just a little while ago, I finally got to talk to one of the pediatricians at the office, although ours is not in today. I will look forward to talking with Dr. Nick on Monday and hopefully understanding things a little better. For now I know that his MRI did not show any signs of brain injury at birth. WOW!!! That is HUGE! Everything looked like it was in the right place and there was no scar tissue indicating there could have been brain damage. The doctor seemed to push towards us seeing the Geneticist asap, somewhat suggesting that there could be chromosomal problems leading to his microcephaly, hypotonia and developmental delays, but many of them show up in the MRI and obviously he had a "normal" MRI.

Dr. McCormick said it's a real possibility that he could be completely normal and that his issues could be easily explained away. His microcephaly could be that he just has a small head and maybe it runs in the family. And his developmental delays, although they are real, aren't drastic at all. They could be just because he's "lazy" (the doctor's words, not mine!). And the hypotonia could just be how he is, no issue attached to it. This is all music to my ears, although I understand there might still be a genetic component to all this.

We have an appointment with a Geneticist later this month and we'll know more once the bloodwork comes back, but I wanted to post this so you could know asap and rejoice with us! We were told that the pediatric neurologist in Louisville was no longer taking new patients so we were going to head to Cincinnati if the MRI showed us concerns. But my parents' friend is a neurologist and is getting us in to see him anyway! So amazing how God works! Thanks again for all your prayers and support. They were certainly felt through this unforgettable experience! And although we aren't 100% in the clear, I am choosing to focus on the good today, and what a good day it is!!!

Bennett Is Fifteen Months

Our precious Bennett Henry continues to daily fill our lives with love and joy. He is the sweetest little snugglebug ever, has the most angelic laugh and absolutely adores his brother! He just loves... music, bread, books and having Mommy or Daddy hold him (especially Mommy!). Our lives would not be anywhere near complete without our Bennett. He is repeating tons of words, almost a new one every day, and saying a few on his own: Mama, Dada, Uh-oh, Mia and fish and he also does several signs.

So Bennett turned 15 months 3 days after Christmas and had his appointment that day. It wasn't the best appointment. His stats were 30th% for weight and 50th% for height which were both fine, but his head has actually not grown at all since his 1 year appointment so that sent up some red flags. Therefore, our Pediatrician has decided to go forward with the MRI. It is scheduled for this Thursday at 2:30, at which time they will also draw blood for some genetic testing. I am asking my friends and family to of course pray. What they are looking for are any abnormalities in the brain that would confirm their assumptions that it is indeed a brain injury caused at birth.

Depending on the extent of it, and/or the lasting effects, he might be diagnosed with Cerebral Palsy. Cerebral Palsy is basically just brain damage that occurred usually at birth that has lasting effects, typically on muscle tone and motor skills but it can also affect other things, including learning disabilities. If he does indeed have CP, it is a mild form. The images that flooded my mind in the doctors office that day (as I bawled my eyes out) were of children in wheelchairs, etc. By God's grace, Bennett will not be that child. He has been identified as having hypotonality, or low muscle tone, which is probably the main reason he still isn't really walking (the most he's taken at a time was 6 steps and that was a couple weeks ago). He will also be having genetic testing done to (hopefully) rule out some chromosomal causes to his microcephaly.

His theraphy through First Steps continues to be one of the biggest blessings in my life, although it is quite time consuming. His PT, Teresa, is absolutely amazing, kind, educational and very smart. I trust her with his life. She has been more than a PT to him and almost a therapist to me as I cry and process through all of this with her, asking millions of questions. She, as well as his other therapist, Kate, are very reassuring that they think he will be a typical kid or very nearly one. I cling to that and pray they are right! He is continuing to be pushed every week by them and every day by me to walk, communicate and learn and he is making progress. Every step he takes (both literal and figurative) is super encouraging to us.

Take a minute to look at our sweet 15 month old, and we ask you to please pray for the MRI to go smoothly. He has to go completely under for it so that requires an IV and my prayer is that before he is put under, he would at no time be scared or in pain. Also, please pray for them to find nothing but a typical 15 month old's brain. It is possible because his delays could be completely normal and he could just have a smaller head genetically. If there are problems, I'll try to update the blog as soon as I can. We are hoping to receive the results Friday afternoon. He will later have an appointment with a geneticist and probably a pediatric neurologist. Thank you for praying for my angel! We are trusting God, whatever the results.

He is cruising everywhere these days!

What are you looking at?

This is a terrible picture but the only one I have of him standing alone, which he does really well and all the time now, for a long time!

There are a lot more "fights" around our house over toys these days. Bennett always wants whatever Jack has and Jack always wants what Bennett has!!

But they also get along really well most of the time!

Bennett's new favorite game is having Daddy fly him through the air by holding onto his clothes!

Weeeee!

Until Kevin took the tree down last week, I was struggling with this problem, Bennett constantly grabbing every ornament within reach! Surprisingly, Jack left it along most of the time.

Kisses!

A couple weeks before Christmas, Bennett started having more fits where he would just throw himself down on his back and scream and cry! I called them Scarlett O'Hara moments. They have gotten a little better lately, although from time to time, Scarlett will still rear her ugly head!

Jack is the sweetest brother. He loves Bennett so much. He likes to go to the top of the stairs to cheer Bennett on when he's crawling up them and then he gives him a huge hug once he reaches the top!!

When I'm cooking, if Bennett is not clinging to my leg whining for me to pick him up, he is getting into all the kitchen cabinets.

And he is super naughty and stands up in his high chair (we try to remember to buckle him in) so he can smile at himself in the mirror!

What a little stinker!!!