Tuesday, January 25, 2011

Precious Baby...

We are asking for prayers for our sweet Kendan. At the beginning of this month I noticed what felt like a ridge on the top of his head, from the front of his soft spot running down the middle of his forehead. It felt like the bones had met and pushed up ^. I took him to the emergency room, and the doctor there dismissed it and said his head felt normal. A week later, I took both boys to the pediatrician due to ear infections, and while we were in there I asked him to feel Kendan 's head. His expression changed, and he said that there was something there and I was not crazy. (His words, not mine, but thank you.) He said he wanted to refer me to the cranioplasty clinic at Scottish Rite. Well, everytime I hear Scottish Rite in the same sentence with my baby my heart skips a beat. I realize they are the best, but I also realize they send you there when it is serious.
We had to take Kendan last summer at 4 months old because the pediatrician felt fullness in his fontanelle, and Kendan was running 104 F fever. That can be a symptom of meningitis, but also can be a symptom of a bad virus which is what he had after they did a spinal tap and numerous other tests. I was such a wreck that day I got on 285 headed west when I needed to go east. *sigh*
Anyway, we were referred. So, I called the cranioplasty clinic and left a message on their nurses line. The nurse called me back and based on the description I gave her for the referral (his ridge) she said we actually needed to see a nureosurgeon at Scottish Rite!!!! My heart stopped. It is beating again, don't worry. But I have moved into mommy bear mode and I have been doing all I can to learn about this, document, make appointments, and make people understand the urgency because this is MY baby! The neurosurgeon's office said it can take a week to a week and a half for the doctor to review the medical records and get back to the nurse with how quickly that patient needs an appointment. They had our records for 1 week, and we got a call. I was expecting them to say we have an appointment in June, but they didn't. They said we have an appointment February 23rd! I was relieved at how quickly we are getting in, but also scared at how quickly we are being seen.
Here is what I have learned so far...I think. :D {I reserve the right to be misinformed on some of this info} What Kendan has is called a metopic suture ridge. It is where the plates in the front of his head fuse together prematurely and extra bone is deposited forming the ridge. Some children have trigonocephaly with the metopic suture ridge, and trig progresses. Meaning the forehead will progressively become more narrow and pointed or triangular. If Kendan just has the ridge, the doctors will probably just watch it. Lots of children have ridges. If he has trig, it is my understanding that surgery will be required.
I have also learned that there can be developmental delays with this, which Kendan does not have at this time. He is developing perfectly normally for an almost 1 year old! This is part of why I am in such frenzy mode; I do not want to wait until there are delays before we take action if action is necessary.
There are a few things that have me concerned as well regarding this situation, and are on my list of questions to ask the doctor about. First, Kendan has gone from a baby that slept 10-12 hours every single night from the time he was 3 months until 10.5 months to now he is waking up 3-5 times a night! He wakes up crying, and drinks a bottle. However, sometimes it is only an hour from when he last woke, so I know it cannot be that he is THAT hungry. It is not a normal progression to go from sleeping to not sleeping. On one night last week he was up at 12, 2, 4, and 5:30. My mom asked if maybe there was pressure and sucking relieved that. So, I went to a great website called craniokids.org (great site if you want more info) and sure enough sometimes there can be intercranial pressure associated with it. I'm not saying that is definitely what is going on, but I've exhausted all other possibilities trying to get him to stay asleep! I feel like a new mom...exhausted!
Second, he has started hitting his forehead on things on purpose. Not extemely hard, but enough for me to notice. His pediatrician said this could be just the age he's at, some kids become head bangers. I do realize that. I also realize that the sleeping thing could be a fluke too, but when you look at the whole picture it makes me wonder if they are related.
Please pray for him as we go to the Neurosurgeon Feb. 23. Please pray for God's protection over him. Please pray for the doctors we are going to see. Please pray for Josh and I that we would not let worry or fear take over. We know that God has a plan, and He is in control whatever the outcome may be. We know that He loves Kendan even more than we do, and therefore, we trust Him completely.
I have a lot of friends that I KNOW are prayer warriors, and I am asking you to pray for my baby. I want him covered in prayer. Thank you from my home to yours.


Drena said...

Omigosh! I know you have been a nervous wreck! Hope your faith is providing you comfort.

Will say a prayer for your family.

sjefferson said...

Definitely going to be praying for you guys. Just so you know, at 9 months old, Grey is STILL not sleeping through the night. I've been to the doctor numerous times and it's really quite normal. In fact, my doctor (who works at CHOA) said a very small population is sleeping through the night before one. And it is quite normal for them to sleep through the night, then switch back to not sleeping. At their age they have some much going on in their little worlds that it's hard to settle down. Often before they learn something new, sleeping habits are disrupted for a period of time. (For me that's been a large majority of Grey' life!) Grey has always been advanced in his developement, rolling over super early, crawling really early, etc. So, my dr. said he has a ton of brain activity and that's the reason he's not sleeping. He's just too busy. Anyway, I just wanted to tell you that in hopes it would bring you a little peace. Sure it could be related, but try not to let you mind go there. It's super, super common amongst their age group. Also, know you're not the only mother of a nearly 1 year old that feels like you have a 1 week old! :) I can't even remember what 5 straight hours of sleep feels like.

Rachel said...

Praying Praying Praying. He's got the best mom/advocate/prayer warrior/won't stop til she gets an answer person on his side. Praying for you my friend...and for Kendan. Keep us updated!