On Percentiles and Pride

I just typed a novel about my child. Then I edited and re-wrote it multiple times. Then I deleted it. I can't figure out how to say what's been on my mind. Here's some pics instead.

Check out those muscles!

 

Picnics on the lawn with his new shades

Reading Hop on Pop during church

April 12, 2013

Evan and Daddy at Vivian Park for Evan's first barbeque

 

Watching Netflix with Daddy

Evan's been working out his abs and practicing sitting up

Evan loves his cousin Maya

And Maya loves Evan!

Daddy bought Evan a jumperoo. We were worried he wouldn't like it, but no--he loves it! He has a very serious face when he jumps and his feet barely touch the ground. We're hoping it encourages his feet to lay a little more flat as he learns to put pressure on them.

Mmmm...mashed potatoes

SB Mom

You know you’re a Spina Bifida mom when…

• Your child thinks tape measurers belong wrapped around his head

• Your daughter tries to cath her doll

• You open your purse to get out your wallet and a catheter falls out

• You read “Eight Silly Monkeys” and each time they fall off and bump their heads you wonder, “Is the doctor who Mama called a neurosurgeon?”

• The entire “D” section of your phone’s contacts are Dr’s

• The doctor says your child has tonsilities, a UTI, and fluid in his ears and you are RELIEVED because it's not shunt-related

• You know more Neuroanatomy than a second year medical student

•  You can interpret ultrasound results yourself while the tech is doing the scan

Pray for Baby Hadley

Baby Hadley is one of Evan's friends with Spina Bifida (the term "friend" being used lightly to refer to anyone who has Spina Bifida who we meet--mostly through Facebook). I've had regular updates by Hadley's mom over the past few weeks while Hadley was in the NICU. Baby Hadley died today.

It broke my heart.

March 30

Hadley's doctor this week told the family, Thursday, that her brain did not fully form. There is no way right now to tell what she can or cannot do until she does it or doesn't do it. Also, the doctors have said that if Hadley isn't able to breathe on her own they may need to consider a tracheotomy and a permanent breathing machine. Please pray for strength and that Hadley will be able to breathe without the machine.

Hadley had another E.E.G to check for seizures. Results should be back by tomorrow afternoon.

April 1

Hadley got her stitches out today!!! Also, the EEG came back and showed no seizure activity, but did show some abnormal activity. However, this could be her "normal". The doctors are still trying to wean her off the vent a little at a time. She didn't have any big spells today and overall had a good day. Praise the Lord! Thank you for your continued prayers.

April 2

Hadley's tube came out about an hour ago. She is on a vapotherm machine. This her her last chance to breathe on her own. If she can't then we will have to discuss putting in a tube and having a permanent breathing machine. Please pray for her now. Thank you so, so much.

April 3

Hadley had a good night. She is still on the Vaportherm, which is good news. She didn't have any big spells last night. Waiting on the doctor to round.

We have the best nurse ever! She found Hadley bear a little swing to hang out in this afternoon. Still no big spells. She is doing good so far. God is listening! He is great! Thank you all!

Hadley just had a spell. She got mad and quit breathing. Twice. She is ok right now. They didn't put the breathing tube back in. But if she keeps on they will have to. Thank you for your prayers.

April 4

Hadley had 2 more spells this morning. She is now back on the vent. I just do not understand. They will be doing an MRI at some point to look at her brain again. Please pray that they find out what is wrong.

They are saying she doesn't have the part of the brain that drives her to breathe. But that is looking at a month old scan. That she uses up her reserve and just poops out. So now we are waiting for the MRI. And hoping something can be done to help her. They said it may be today or tomorrow before she gets it. She is sleeping right now.

Still on the vent. It came out once and they put it back in. She has been breathing on her own over the vent most all day. Waiting for them to send her for her MRI still. No big spells. Just waiting. Thank you everyone for all your prayers.

April 7

They are going to take her off the vent one more time. This will happen in about an hour or 2. Please pray for Hadley to have the strength to get through this. Thank you so much. And thank you, Lord, for everything you have done for us.

April 8

Thank you all for the prayers. She is still on the vapor Therm. They have bagged her 7 times since yesterday. She is still hanging in there. She has been fussy and very cranky since Saturday night. They started her back on feeds today so maybe that will help make her feel better. She is resting now, had a long day.

Neuro is suppose to be looking at her scans to see if there is anything else they might can do.

She got a shunt and it didn't work so they did a revision. A few days after that is when the breathing problems started. She couldn't swallow or gag after that. They have tested the shunt twice since and it is working. She is just missing a large amount of her brain and they say that is what is causing her breathing problems. And the fact she can't swallow or gag. She kind of smothers on her own secretions.

She has the chiari II malformation also. Which is part of it. But they didn't say anything about decompression surgery. I will ask tomorrow morning during rounds. Thank you.

I asked about the decompression surgery. One of the fellows is going to talk to the neuro. He said they had discussed it already but never came to a definite conclusion. That they didn't think it would help. But he would double check. We are having a meeting with the doctors tomorrow and the social worker has arranged for my husband (Joe) to be here for that. We will discuss the decomp. Surgery then. Thank you all for your prayers.

Hadley had a ruff day. She was fussy and just couldn't sleep for longer than 5-10 minutes without waking up and crying. Except for when I held her and then gave her a little bath. She finally fell asleep around 7. Hope she stays comfortable tonight and rests good. She had a few spells where they almost bagged her but she pulled up. She is a tough little bear. God made her strong.

April 9

Hadley is doing ok. Still on the vapor Therm. They won't put her back on the vent anymore. They said it does more damage than good. The doctor this morning believes she is starting to develop pneumonia. So they are giving her antibiotics for that. She is very cranky today and only sleeps for a few minutes at a time, then wakes up and cries. I am fixing to give her a bath and hope it helps her calm down.

April 11

Pease pray for Hadley's family. They have said goodbye to their precious baby girl who has gone to be with the Lord.