A Happy Boy Always

Well, we had our second Shriner's appointment. A whole day that started at 7:30 am and went
till 4:30 pm. It was pretty exhausting. The day started with a ultrasound on Elijah's kidneys for his reflux. After the ultrasound we met with the "Spina Bifida team" to go over everything. When you have kidney reflux there are different stages of it being 1 not bad and 5 very bad. Elijah's was at stage 4 or 5. Everything we were doing at home was not enough to make it get better. They suggested a surgery called vesicostomy. They basically move the bladder below the belly button and make a cut for the bladder to drain urine from, which relieves the pressure from his kidney's. He will have this for two years and then they will put it back. Before we decided whether or not he would have this done he had to go have a different procedure done called a Urodynamic testing. They push fluid up into the bladder to see if it re-fluxes into the kidney's. And it did. It rel-fluxed so bad they didn't even get a good chance to look at his kidneys. So being the way that that test went, we opted to go ahead and do the surgery. Elijah has also had two bladder infections that were happening right on top of one another. He would get fevers and fussy. So, a week later we had the surgery. We feel that it was the right move and has made our lives a little less stressful and easy. He went in for surgery and did wonderful. He was laughing at the nurses right up until they took him back. When he woke up he had his precious-as-ever little, smiling face. Here are some photos from the surgery day. We only had to stay one night. 

Smiling at the nurses

Hungry and getting ready to go back

Still sleeping in recovery

I had a really good nap!

Grandma and Elijah

Ready to go home!

The surgery was a few weeks ago and he has healed very well. It's never fun seeing your baby go through surgery, but I know it is to help him and that the Lord has his hand on my lil' boys life. I'm always ok when I am at the Doctor's hearing everything, but then when I get home that is usually when everything sinks in, and I have a hard time with it. I am just so incredibly blessed by Elijah I can not imagine our family without him. His sweet personality brings such joy into our family. Since Elijah had his surgery he has had no bladder infections praise the Lord!

 We did have his MRI this past week. It went OK, but it was a long, long day for all of us. He had to be put unconscious with Anesthesia, because he is too cute and wiggly to hold still for an hour of imaging. The anesthesiologist at the testing facility was the same one from the hospital where he was born, during his first surgery to close the Spina Bifida! He was getting fussy, and they put the medicine in without us realizing it, and before we knew it, he was out. we were in shock of how quick it all was. When he woke up, he was crying and out of sorts for a few hours, but by the end of the day, he was back to his usual chipper self again. You just can't keep a good baby down! The MRI went so long we had just enough time to drive to his next appointment with the Neurosurgeon, the one who has done all of his brain and back surgeries, to discuss the MRI results and his progress.  

So hungry he's even holding a pacifier

 And devouring daddy's face!

 Wearing his little Ki-Man-o (and quoting Shakespeare)

 

So out of it...

Our little man (born Awesome) is developing well, but the Neurosurgeon said we will not have a good estimate of his future abilities until he is about 3 years old, but getting MRI and other diagnostic procedures along the way will help them and us understand his progress along the way. We can see that his brain is growing and filling the space in his head, and we just pray and trust God that he will keep surprising us with everything he can do. There has been a bubble of CSF fluid leaking out from around the shunt (under the skin) where it exits his skull, it has been there for a few months. We had called on it, and they never seem to want to do anything, until the neurosurgeon said that it may mean that some of the 60 micro-tubes in the shunt can be clogged with the excess protein that his body produces in his CSF, due to his neural-tube issues. It is functioning, or we would have seen worse signs, but they are most likely going to be scheduling a shunt revision surgery to replace it in the next week or two. It is sad to think that we will keep having surgeries come up in his life, and sad to know it hurts and he can't tell us. We rejoice that God gave him to us, and that we have medicine given by Him that can help him through life.

Here is his latest achievement. We're so proud of our little handsome buddy fella!