Tuesday, November 14th

It’s hard to believe how quickly time is passing! It feels like just yesterday we updated the site..but it’s been 6 weeks! Thanks to those of you that have been keeping baby Nathan in your prayers, we really appreciate it. And thanks to those that have been checking in with us, you’re very very kind.

Well, lots has happened in the last few weeks. Finally we were able to have the MRI on his brain, and Doctor Lazaref, the neurosurgeon, believes Nathan needs a shunt. He is going in for surgery on Friday, November 18th.

The MRI showed that Nathan does indeed have hydrocephalus, and additionally he has a cyst in his brain that needs to be drained.

Doctor Lazaref thinks that the increase pressure probably causes him pain and discomfort and he believes that’s one of the reasons he cries so much.

The MRI confirmed the diagnosis of semi-lobar holoprosencephaly, with a bunch of other brain malformations such as agenesis of the corpus callosum, agenesis of the septum pellucidum, and the dorsal cyst. Additionally, he is missing a large portion of his brain. We are hoping that this is partially due to compression due to increased pressure, and we have been told that sometimes, after the shunt surgery, the brain expands.

If you want to look at pictures of his MRI, they are here: www.prayfornathan.org/mri-all.php You don’t need to be a neurologist to see that he’s brain is very malformed. Here’s a picture of a normal brain, next to Nathan’s brain:



However, every doctor we’ve talked to say it’s difficult to look at a picture of the brain and say, this is what your child will and will not be able to do. They say the brain is extremely flexible so we need to give him every possible chance and let him be the one to tell us what he can and cannot do.

Every doctor has told us to expect delays, there’s no question about that. But whether he will be able to walk, talk, learn, etc…only he can reveal to us over time.

His brain seems to be adapting well, as one of the things the doctor pointed out to us is that the part of the brain that is used to process vision is completely missing in Nathan. However, Nathan can see and respond to visual stimuli. So somehow, somewhere, his brain is processing this information.

Next month we have an appointment at the Carter Center in Stanford. They specialize in researching and helping children with holoprosencephaly. We will see many of their specialists and they will give us a report based on reviewing his MRI about what areas are most impacted and how he will be able to adapt to them.

Other than that, he’s doing a lot better these days. The non-stop, all day crying has stopped, and now he cries like a normal fussy baby. He cries when he’s bored, hungry, has a dirty diaper. Which is so wonderful as it was hard to see him crying and suffering all the time.

He is becoming more and more a distinct little person. He is very talkative and coos a lot. On Saturday November 11th we heard his first chuckle…he was laughing so much it was absolutely delightful. He makes very cute sounds when he’s laughing, and he loves to smile. He is very curious about the world around him, and wants to check every sound and movement out. Also, he is starting to want to put everything into his mouth and we have gotten him little toys that he can grasp and bring to his mouth. Most of the time he misses, but that one time when it works, you should see the delight in his face!

He definitely got his mom’s temper – he is very impatient, wants things now, and gets frustrated and angry quickly if he doesnt’ get what he wants right away. He has a loud voice and makes his needs known 🙂

His tone is still very high and he still arches quite intensely. It’s very cute to watch him trying to get his thumb in his mouth, but the high tone makes his arms a bit stiff so he can’t quite reach. But he spends hours trying, you can see him with a look of intensity trying very hard to get that hand in his mouth.

To help him with his tone he gets physical therapy once a week, and he gets massages twice every day.

He LOVES the water and he’s got to be the cleanest little boy out there. He gets 30 to 45 min baths twice per day, and in the early afternoon he gets in the spa with Owen. He absolutely delights in water and always enjoys it.

Oh, and the latest is that he wont’ take his morning nap unless he is being held. The moment you put him in his crib he wakes up crying. So now one of us has to go to sleep with him in the morning so he can sleep for more than a few minutes.

Although the results of the MRI were frightening, we are encouraged as he seems to be doing so well.

We really appreciate everyone’s prayers and support, we just can’t thank you enough.

Please keep us in your prayers on Friday and Saturday as we go into surgery. Although the doctor says it’s fairly routine procedure, it’s still very frightening as they will be drilling a hole in his skull and placing a foreign object in his brain. So please please keep him in your prayers.

THANK YOU SO MUCH, we are very grateful to all of you.

Comments

  1. You little boy is so cute! Best wishes. He truely is a blessing.

  2. Jane Francis says

    You’re right to take the view that you’ll let Nathan show you what he can do. He has so much potential. He might just totally surprise everyone in years to come, you’ll look back and wonder what you were so worried about. Nathan is a treasure, enjoy.

  3. Kimberly Riebel says

    I hope he gets better he is so brave and I am glad to hear that he is doing well and is laughing! I found your webiste while looking up birth defects for a high school class! Your family is in my prayers every night!

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