First Word

Baby said "Da Da"!!!  I was just saying a week or so ago that he is just so quiet, he rarely cries, and wasn't making babbling sounds yet.  Well, he's discovered his sweet voice.  He is still quiet most of the time, but every so often, he just babbles away.  Then, he started saying "Da Da Da Da"!  We all love it, especially Daddy.  (Mommy's slightly jealous and is now working hard on getting his lips to make that "mmm" sound for ma ma!)  :o)  Cooper says that he's saying "dub", too; (which is our nickname for him)-  so he's so proud!

He also bit a ritz cracker at feeding therapy.  He even kept chewing using biting motions with his mouth!  This was a huge deal I have been told!  He's having a hard time going to sleep at night.  We are transitioning him towards Elecare Jr. which is equivalent to transitioning any one year old to whole milk.  He is currently still on Elecare, but I'm increasing his calories, which allows us to decrease the quantity.  (He gets less boluses-  he has 4 now, with free water given throughout the day, while keeping his total daily calorie intake the same.)  This is stretching out his feeds, making him hungry  (YEA!!)-- This is wonderful and ideal; however, it is hard because he isn't eating foods yet.  His little tummy just growls and growls and causes him to stay awake.  He doesn't cry over it.  (Like I said earlier, he rarely ever cries.)  Praying he starts to recognize that the food we are trying SO hard to get him to eat, would provide comfort to his belly.

Dear God, from Kate

Dear God,

          

            You have been very good to my family. I am very glad my brother is home. You have blessed us with wonderful and caring friends and family to guide us through the difficult times. It is finally spring,it is still kind of cool outside. It is Lent season also. We are getting prepared for your Resurrection. That can relate to Caleb. He will have to have surgeries, and we will be sad. When he recovers, his heart will be new. Because of Caleb and Jake, I would like to become a Heart Surgeon when I grow up. I want to help little boys and girls get well and get to go home to their family. My mom said that you definitely gave me a special gift through Caleb. I will work hard to please you.

Love,
Kate

                                                                                 

Third Time's a Charm

Same thing happened again last night.  I had discharge papers in hand, was changing his diaper and about to head out the door when he started throwing up again (he hadn't done it since yesterday's "discharge"!).  We suspect the throw up is his response to his aversion to the extra secretions/mucus going down his throat. The doctor came in to assess and decided he needed to stay (should it continue he could've easily gotten dehydrated.).  He slept well overnight and actually became playful for a bit before bedtime, and woke in a happy, smiley mood this morning.  We were just discharged for the 3rd attempt in 3 days, but made it out and home!  Yippee!  He's extremely exhausted and thankful for this glorious day so the kiddos can play outside while he rests in quiet!

Rhinovirus knocks this little Guy Down

So the official diagnosis- Rhinovirus- a.k.a. The common cold!  What would hardly affect most, has been so hard on Caleb.  He really doesn't have many symptoms of a cold, but we suspect the drainage is going down his throat and into his tummy instead of out his nose.  Yesterday we were actually discharged and made it out the door and pushing the elevator button when he started screaming, retching, and throwing up.  We barely squeeked back into the room before it was cleaned and were lucky to not have to go back through the ED!  We'll see later how it's billed- praying not two admissions!  They gave him zofran to help settle his tummy, but it, in combination with just feeling awful, made him so out of it.  His eyes did very unusual movements and he made little eye contact with anyone.  Neuro was called and they sent him for a CT scan and an EEG.  They said that due to his epilepsy, with any illness, he is likely to seize.  The neurologist explained that on the EEG that was administered last Thursday (ironically), it showed that his brain has spots that are like "sparks" ready to ignite.  

In spite of his discomfort and fussiness which is so out of sorts for him, the plan is to discharge him today, which will be good so that he can get home and get the sleep he needs.

Thank you, once again, to all our friends that have prayed for him, along with the assistance with the kids!  Spring break was not the  "ideal time" for this!!  We are truly blessed more than I can ever express.

Swollen, sleepy- back to the hospital we go

It's the worst to watch your child get stuck, knowing its close to impossible, all the while being able to do nothing but kiss his head and hold his hand. 

 We came back in the ED today and are staying overnight on the floor for monitoring.   He has been extra puffy, breathing harder (grunting) at times, and sleeping a lot.  I cannot describe how hard it is as a mommy to question "do we go in" or not.          It's hard not to start over analyzing every little thing, but also knowing his history and how quickly he can turn, just can't take any change without caution.  All the while, knowing that going in means having to run all kinds if tests, sticking him over and over in attempt to get blood. 

So far, all tests have been negative, so no reason for his symptoms.  Which is answered prayers, but also, concerning.  Ahhh!  

He did love getting to the floor and seeing all his peeps!  He was all grins and flirting.  He loves the attention and it makes me so happy to see how loved he is by all the staff at our great hospital.

11 months old!

I cannot believe Caleb's 11 months old!  It was a beautiful day to praise God for a wonderful past month.  He has been rolling all over much more consistently.  His arm gets stuck under his body, so I pull it out and he keeps on going.  He continues to work on sitting up, but needs a good bit of support for his trunk.  His head strength is improved.  He wears out quickly, but is learning to rest it when he needs to.  He's trying new foods (bananas, applesauce, pears, graham crackers, veggie sticks), but is learning to spit it out.  He does like the ritz.  He's showing signs of being hungry (growling-  yea!)but just doesn't want food in his mouth.  

He loves his toys and jumping in his jumperoo.  He isn't in it for more than a few minutes because it wears him out and we don't want him to go up on his toes.

He went on the swing for the first time at therapy!

The big fishing outing!

10 months old

I'm finally getting a post done that I've started and stopped for fourteen days now to celebrate Caleb turning 10 months old!  It's wild and crazy in the best of ways at our house.  Lots of homework, laundry, thawing out meals that friends made (we froze the leftovers of over the past months- Thank goodness- or we'd be eating cereal every night!), chasing kiddos in and outside, and then throw in the all consuming meds, feeds, therapies, doc appointments... & all else that Caleb throws in!  Whew!  He's a full time one on one-24 hour a day job in himself.  We were in the ED on his 10 month birthday, but thankfully, we were discharged and didn't have to stay.  They never could determine a cause of his throwing up so much after the one feed.  These are our reminders of his sensitivity.  But thankfully, he tolerated his feeds and meds throughout the rest of the day.
 He is working so hard in his therapies and we generalize the skills throughout every day.  He finally started rolling from his tummy to his back two weeks ago and has that officially mastered now.  He has rolled from back to tummy a few times (which we were ecstatic about), but doesn't do it consistently yet- and he has to be very motivated by favorite toys or siblings laying next to him practically rolling themselves to encourage him.  His neck control has greatly improved.  His head is just so heavy on his neck that it wears him out quickly to hold it up for long.  He is very close to sitting up by himself for just a few seconds.  We are so proud if the strides he's making in feeding therapy.  He is actually tolerating mouth stimulation via a z vibe (to "wake his mouth up and give him the input pressure he needs) and my finger to stretch his cheek pads which have built up fat tissue.  We are slowly lessening his overnight feeds.  He now takes in (via the feeding pump) 4 bolus feeds during the day and one overnight continuous feeds at a slower rate. Our goal is to eventually get his feeds more age appropriate as well as to encourage hunger (which he has never shown!).  He has begun to tolerate a little baby food.  We've introduced sweet potatoes and oatmeal. He doesn't love either, but doesn't completely despise it either.  He does shake his head no and clinches his lips tight.  I think this is a response of just not knowing what to do with it, once I get it in his mouth.  It just falls out his mouth.  We have to do a lot of encouragement ( singing to pry open his mouth and also as we model swallowing.  We sing, "Ah, ah, ah..." And "who's that tapping at baby's mouth?  It's, mommy, it's mommy!").  We have found one thing he loves!  Ritz crackers (crushed).  We are hoping to find more he can tolerate that he likes, as well.

His head is healing nicely.  The last of the glue finally just came off this week!  It was super thick.  His hair is starting to grow some on that side. 

We treasure every smile, snuggle, and improvement and give him lots of hugs and kisses with extra sanitized hands!!

The boys are ready for baseball season  to start up.  Practices have recently begun.  When they aren't tossing the baseball back and forth, their new favorite backyard activity is lacrosse.  They are quickly learning the skills of how to toss and catch and love getting to hit at each other to try and knock the ball out!  It's both fun and scary to watch!

Kate's dance is going strong.  She's gearing up for performances and working on school projects, memorizing passages, &  studying for many tests,  at the same time.  

Working hard holding his head up, playing with a toy, in occupational therapy.

Enjoying a beautiful day outside and watching the boys play lacrosse.

His head is healing nicely!

Ecstatic to see signs of warm weather!