5 Months & Dr. Roberts

Last week, Davis turned 5 months! EVERYthing is developing normally...physical, language, etc. Yay! He is starting to sit all by himself for a few seconds at a time. The longest has been about 30 seconds (only once). He's wanting to stand all.the.time. My arms get tired, but I let him! He even "takes steps" sometimes! :) He had his first illness and is on his first round of antibiotics. Blech. He will NOT swallow it, so we put it in the feeding tube. We found a perk! :) His feeding...ha. It's worse than ever. I'm not really sure what the next step is. The doctor said to call him Thursday (4 weeks from surgery) if he isn't taking all by mouth. Davis is perfectly content with NOTHING. Ugh. Please keep praying for his feeding! The feeding tube got him kicked out of daycare. I'm still not sure what we're going to do. We have someone this week, and 3 different people next week, then nothing after that. We have one "maybe" but she wants to see how everything is done before she commits to it. I think it will work out. Brandon is good friends with her husband, and she tells me their daughter was a terrible eater as a baby, and though she didn't have the surgeries, had the same issues. She would be a good match! Pray that it works out! It would only be temporary, so please also pray that something will work out long term. He can go back to daycare with the tube, but they won't use it...the doctor said he has to go several months without using it at all before he'll take it out. I don't really want him to go to daycare. I'm hoping and praying the lady who keeps our neighbor's little boy will have an opening. Somehow, home daycare makes me feel better than "real" daycare.

We had our next follow-up with Dr. Roberts (the neurosurgeon). He said Davis is "amazing!" His words! We agree. He said that he's never seen such a thing! So far, physically he's developing ahead of other "normal" kids his age, we're still shunt free, and he thinks we'll stay that way! He said that if he makes it to 6 months of age without a shunt, he'll LIKELY NEVER NEED ONE!!! Of course it's always a possibility, but I like the odds! Davis will have another MRI in December, and we'll see Dr. Roberts again then as well...just to be sure. However, his eyes are good, his development it good, he passed all his "neurological screens," and his soft spot is still sunken and soft...just as it's supposed to be. Yay! He also confirmed something a nurse recently told me; that those with spina bifida who are not cathed (bladder), typically do not have the latex allergy, and are no more likely to acquire it than you or I. He recommended that we continue to not feed him the foods on the latex list (banana, pear, kiwi, and avacado), and keep him from latex for now, and we'll do testing later. He said as soon as he's old enough, they will send him to an allergist for skin testing for those particular foods, and latex itself. He said if all is negative, we have nothing to worry about! He didn't say how old he needed to be for that. I go see my allergist in October, I'll ask him. Someone told me they think it's 2 years of age. We will see. He said Davis' actual spinal defect was so low, the actual spinal cord was not affected at all. Only a couple of nerves, which appear to be bladder (possibly bowel) related. His actual bladder function is normal, but the sphincter that gives him the ability to hold it appears to be "loose." He said the same thing the urologist said...we'll worry about that later! :) So, overall, another FANTASTIC report! I've said it before, but I LOVE Dr. Roberts...more so every time we see him. I also love that he always has good news!

Now, PICTURES!!

Since he turned 5 months on Mommy's birthday, Daddy took our picture together!

Sitting up! This was the night he sat for the 30 seconds.

He needs no help "standing." Balancing is another story. :)

He just took the 2 steps for the first time. He could NOT figure out what Mommy and Daddy were so excited about!!

I didn't realize my computer rotated this picture. Sorry. He plays with his ladybug and this ball all the time. Even in his sleep! :)

Watching football! We still do tummy time, but have to alter it to keep him there. His neck is fine, but we want to make sure his back is strong. Can't crawl with "noodle back" and he's trying so hard to crawl! His legs have it down, it's the arms and back that are holding him back. I love it!

More sitting practice. I bought this car before he was born, and he has fun in it. When he gets tired, he leans over and chews on that mirror.

Sweet boy! We are so blessed!

Again, because many of you ask...specific prayer requests:

-FEEDING!!! He is supposed to be taking 6 ounces every 3-4 hours. He takes next to none. We're able to put 5 in the tube. (It's all he will tolerate.) Please pray he starts taking 5 by mouth! The doctor said since we have started adding extra calories, they would be happy with the 5!

-His head! We want to stay shunt-free.

-His bowel/bladder function. Again, fine for now, but we are unsure of what the future holds.

-His FEEDING!

-His parents sanity! (This is a big one!)

-The whole "childcare" situation. We need to find a place for him. I would prefer it be an individual who either keeps him here or in their home, or a home daycare. He'll get more attention that way. I feel better knowing someone is able to love on my baby when he needs/wants it!

Thank you all for your prayers! We know how blessed we are and love our miracle baby more than we could ever express!

Follow-Up

I had every intention of updating this blog tonight...5 months, follow-up appointment with the neurosurgeon, etc. I will get there, but not tonight. I will though. Just know that the appointment went GREAT! A quote from Dr. Roberts: "It's amazing!" There is a lot more info...a lot, but I'm tired, and still have to wake Davis to eat one more time. I'll be back. For sure by Sunday. :)

Ranger Game!

Last night we took Davis to his first Ranger game! It was hot and incredibly humid, but he did great! We got there a little after 6pm. We "roamed" for about an hour...taking it all in. He really loved it. And, so did his daddy. :) The actual game started at 7:05pm. FIVE HOURS AND TWELVE MINUTES LATER, it ended. Longest.game.ever. Davis fell asleep around 8:30 in the 3rd inning, and woke up an hour-and-a-half later in the 5th inning. See, told you it was long. The game ended a little after midnight, we got to watch the blue man group preform one "number" (I don't exactly know what they call it), and then there were fireworks! My favorite part. We walked out of the ballpark a little after 1am. Excellent parenting, we know. And, yes. Other than the 1.5 hour nap, he was awake the entire time. We went with Brandon's Uncle Gary, Aunt Sheila, cousin Becci, her husband Cody, and their boys Austin and Dylan. Austin is 3, Dylan is 3 weeks younger than Davis. I'm sure the people sitting around us cringed when we walked up, but I am certain we had the 3 most well behaved children in the entire ballpark! For the record, Austin has ALWAYS been the best kid EVER...and Dylan appears to be following right behind him. A reflection on their parents, for sure. As always, this "first" is WELL documented. And, yes, I am fully aware that the watermark "ruins" some of the pictures. Oh well...it protects our pictures and our boys! Here are a few of the pictures:

They were ready. Davis couldn't figure out what daddy was so excited about...yet.

First glimpse of the field. His eyes were HUGE all night!

Checking out the pitching we would face.

Game time!

Our family...with Nolan. :)

B and Becci with their boys. Dylan was not too sure about my camera. His brother was the same way at his age. :)

They needed a nap. It was, afterall, past their bedtimes.

Look at those blue eyes! LOVE them (and him!).

Austin. This kid has more personality than any room full of preschoolers. Always has.

You can't see them, but he has the bluest (yes, it's a word...or not. oh well) eyes ever!

Aunt Sheila and Uncle Gary

Finally! They won! Daddy was excited, Davis was trying to figure out why on earth everyone was acting so crazy!

13 innings!! 13 long innings. 5 hours, 12 mins is WAY too long for a baseball game. A side note...Between the 2 teams, there were 19 pitchers! 11 Rangers, and 8 Yankees. Ugh.

Watching the fireworks. Davis didn't cry, but jumped every.single.time one "popped." :) Dylan, on the other hand, was undecided. He was NOT a fan in the beginning (not at all), then he was cool until the end. :)

This one is just bonus. It was tonight just before he went to bed. He LOVES this thing!

The follow-up appointment with the surgeon went well yesterday. He said everything looks good. He also said there is still quite a bit of swelling in D's stomach, and that would explain why he still doesn't want to eat more than an ounce or two. He said give it 2-ish more weeks before we start to worry. He thinks in a couple more weeks, he'll be eating like a champ. I chuckled at the "don't worry yet" phrase. Much easier said than done...especially for a speech therapist who does feeding therapy! We will see! I also mentioned the way he coughs and "gurgles" in his chest during/after each feeding because he's aspirating. He said that is common following the type of surgery Davis had (thus the reason he cannot have formula or baby food for awhile). He said if he's still doing it in 2-4 weeks, we'd do a swallow study. Again, we will see. As always, please keep praying for our sweet baby!! He'll be 5 months old on Tuesday!!

A Whole Lotta Random

Since I've been seriously neglecting the blog lately, I thought I'd just put a bunch of stuff in one big post. Here we go...

He rolls now, so when I put him in the chair like this, I have to sit in the floor in front of it. Sometimes it's worth it just to have use of my arms.

Since he's almost 5 months, I thought I should get this up. At his check-up, he weighed 13 pounds, 11 ounces (thus the feeding tube) and was 24 1/2 inches long. He got more shots, and screamed like crazy. I read the blog of another spina bifida mom. After her son's 2 month check up she put it best. "Most people cry when their babies cry from shots. We laugh, celebrating the fact that he can feel them!" She's so right!! :)He's right where he should be. He plays with toys, stands when you hold him up, sits with support, has started to pass objects from one hand over to the other, smiles when B or I come into the room, laughs, likes to look at books, and he goes to bed between 7:30/8, gets up to eat around 10:30/11, then sleeps from 11pm-6ish the next morning. Every night before I put him to bed, we sit in the rocker in his room and sing. I sing: Jesus Loves Me, Jesus Loves the Little Children, How Great Thou Art, Because He Lives, and Twinkle Twinkle. He has started to "hum along" some. I love it!

See? Loves books. This is a long book, with lots of words, and he studied all the pictures while she read. Thank you, Aunt Sha & Uncle Matt for the Pooh bear and book!

I have no idea. He went out with my dad and sister, and his eyes were showing. This is what returned. :)

"Auntie Said I Could." So true. So very, very true.

First Day of Daycare! He was WAY more excited than Mommy. Ugh.

Sippy Cup Success

He was less than impressed having his picture made during outside play time.

LOVES when B plays the guitar. He stops whatever he's doing and listens.

Just a sweet sleeping picture. I took this picture to show my parents. There are lots of pictures of me that look just like this...burp rag in hand, paci in mouth.

Surgery day. Such a long, horrible day. He was so swollen, and in pain. He was on several drugs, and still moaned while he slept. A.W.E.F.U.L.

The next day was a TAD better.

The third day was even better...he smiled!!

And, briefly played with a toy! (see the g-button? just above the heart bandage.)

Napping like they do at home. :)

Going home day!!

The "set up." When he finally woke up, he looked everywhere for a fan, so my dad made him one. :)

My dad also filled out his board. Ha. The nurses got a kick out of it.

He now turns the pages when we read books.

His first "opening day." (Dove Season, of course.)

His best "mean face" on his first game day!

This is what he was doing at kick off. :) They really should have reconsidered the 2:30 kick-off. Didn't they know it was nap time?! Oh well. He watched most of the game...and they won!

And, here was my sweet baby this afternoon. Can you hear him laughing?!

There. 26 pictures. I think you're caught up. For now. Feeding is still rough. Please pray for that!! We go for his post-op appointment with the surgeon Friday morning. I'll update then! Thank you for your prayers!!