Sippy Cups and An Honest Heart

Darby has been needing some help in the bowels department again, and we decided to go ahead and have him try some apple juice. All I hear is that it "sets you free", so I jumped at the chance of getting darby 'free'. While I was purchasing the juice I saw sippy cups, and thought "hmmm why not?" The sign on the cup said 6+, and he's 6+ (technically), so I figured it was worth a try... this is what happened...

I can't believe how quickly he just grabbed the handles! He just grabbed on and kind of gnawed on the spout.

Don't let him fool you... he barely got any of that juice in his mouth. It seemed like he was sucking on the spout, but the levels never really went down. At least he had some good teething and learning time. It will be beneficial for the future and I'll keep trying with the cup.

Oh, also, he has come to recognize Mommy's camera... He will be doing something adorable and see the camera coming at him and stop and smile at it. My little Ham.

On to other things...
I decided to go ahead and expand on an earlier post from this week. Darby had an evaluation done this last week by a Child Development Specialist. She went through a standardized test to evaluate exactly where Darby's progress in growth was. It measured cognitive skills, motor skills, etc. It was amazing what she did really... and I was more amazed at what she observed. Being Darby's mother has always meant being his advocate. No one on this earth knows Darby better than I do, and sometimes its a burden to have this knowledge... often I find that I cannot communicate effectively all that is Darby. (but don't get me wrong, its the best job on earth.)

After Darby completed his test, the tester (Cathy) and I discussed her findings. Her calculations put darby at being at a 2-3 month old level. In some things he was only as progressed as an average 2 month old, in others he hit the latter end of a 3 month old. She couldn't count some of the things that I knew Darby could do, because she didn't see him do those things... but thats always been darby. I even told her that it was hard to answer questions about Darby and easier for people to see in person what he can do.

Can he reach out for a toy? Yes, but not all the time.
Can he track you around the room? Yes, but not always...
Does he respond to his name? Once in a while...
Can he hold his head up on his own? Sure, when he's in a good mood...

You catch my drift.

But thankfully she saw all of Darby's hesitancy in his skills, his quirks that only a mother usually notices, and his beautiful personality.

In the end, we are being recommended to doing physical therapy, occupational therapy, infant massage, child development services, and to be evaluated by the Junior Blind League. As he progresses, we might do things like speech and whatnot as well.

Here is my honest reaction: blank. After Cathy left, i just found myself hustling around the kitchen, not thinking but doing and doing and not thinking... I expected this news. I always knew that Darby had really stopped his progress a month before the Infantile Spasms struck, and I know he has brain damage (now labeled cerebral palsy). I knew we'd get some lower scores... but to see the actual results on paper kind of broke my heart. I didn't realize fully how much Darby couldn't do. We had focused so much on victories and thats rightly so... we focused on how much he had developed since the spasms were under control. But to be told your 6 month old son has the motor skills of a 2 month old? It hurt my heart.

Still not knowing how to process all this news, I headed to Target... where all the problems of the world are solved ;0) I had my optimistic smile painted on my face and my heart believing it was true. Life was good; things are just fine! Then i ran into the calendar section... saw the 'baby's first year' calendar, and had to run to the dairy section for milk to keep from crying. Immediately I felt grief... if i had one of those calendars, it would be pretty blank. I don't have a 'normal' life. In that moment I realized what I was feeling... my life, as I now know it, was changing. I was being handed a life of doctors appointments, physical therapies every day during the week, research about conditions, worries about practicing development skills, needing to have a clean enough house for company during the whole week (yes i know i'm lazy), and the knowledge that I will need breaks because its going to be a tough haul... all handed to me on a silver platter without the option of saying, "this isn't what I ordered?".

I also felt stupid. Hadn't I had the last 5 months to realize all this? Had I been in denial? No, I haven't... but I also didn't see clearly all that was in store, and to be honest, still don't. Life with Darby has to be taken day by day. Each day has its own rewards and struggles and challenges. Some days are more serious than others, when we are in hospitals or ER suites waiting to see what's going on. Other days are so sweet, when Darby and I decide to curl up on the couch and take a nap with Yo Gabba Gabba singing in the background. I knew we'd have lots of physical therapy to do, but I guess i didn't realize we could have 4-5 appointments a week (in home, thank goodness). I didn't realize darby was so far behind and we had a lot of catching up to do. I didn't realize it was really really really time to grow up.

But there is hope, so so so much hope. Darby uses his arms and legs, hands, feet, and has all the potential of the world in front on him. God has blessed my son in his healing, more than we could have imagined. He has done miracles and still will continue to do so. We don't lose hope for Darby's future; it just remains cloudy to us, but with all the sunshine of the world peaking through.

I am also not angry with God, or regret this life that I have. I love it. With all its craziness, I embrace it. I know that I was made for this life. I was created to be Darby's mother, Jason's wife, and God's servant. So please don't think that I am complaining or questioning in anger... why would God do this to me? I absolutely love my life. absolutely. Its struggles make us better, grow us, shape us. God wanted to show me more than just the birth of a child, but the healing of a child as well.

Thursday Tid-Bits

This is thursday morning tid-bits... just a few...

1. It was a rough morning... darb insisted on eating at 5am, at 5:30 I found him in a huge pool of puked up formula that I had just fed him... I just changed those sheets yesterday... I cleaned him up and he just smiled and laughed and held on to my t-shirt. He thankfully went back to bed... but since changing his sheets his such a HUGE chore with all the stuff in the crib... i ended up just putting him back in the crib on the other side, the clean side... that might sound awful of me to do, but you know you'd do it too if you were half asleep.

2. I get my next Bones netflix dvd today in the mail... booyah!

3. I feel like a nerd when i have to make lots of phone calls to people (medical people mostly), and tell them i don't know who i am supposed to talk to, explain everything, have them forward me, and still i get the wrong person to talk to... blah.

4. I watch much too much noggin.

5. Today we need to get some apple juice... darb has just been so constipated! We're checking things off of our list to try to help him... apple juice is next!

6. We had an evaluation this week with a physical therapy/child development services... it was good because she saw EVERYTHING about darby, which i was just so glad she was able to see... but also kind of hard for me, because I really learned how far behind darby is and how the next couple years are going to be a little tougher than expected. Good but bad, but good. Darby shows promise in his skills, and fortunately we are going to get a WHOLE LOT of services, for free.... physical therapy, occupational therapy, infant massage, child development, and vision services.

7. Darb rolled over! He mostly now just likes to be on his side, since he hates being on his tummy. He rolls to his side, then often falls asleep. Its his new favorite sleeping position.

8. I'm feeling stircrazyish... maybe I should get the car? .... Yay! Jason is going to bring it home and I get to go out... now where to go???

9. Whoever thought up that TV shows needs finales and then openers 3-4 months later, needs to know that was just plain stupid and awful. People like me, with no patience, can't handle that!

10. Can't wait for Jason to get home... then i get to hand him the baby and work on my art project that I've been working on since yesterday... I hope to finish it tonight!!!

Those are good enough musings for today. I will update later on other Darby things... but I'm still waiting for phone calls from medical people :0)

A Reminder

I have been having a day... not terribly bad, but also not super exciting. To tell you the truth, I'm a little stressed. A lot of things weigh heavy on my mind. As I told Jason earlier, I have a line in my mind... and when things start stacking up and hit that line, I just stop functioning. I can't decide on what to do first or sometimes, just what to do! And that's where my contribution to society in being a working member of it, ends.

Today I just knew I needed some time with God. I'd been praying this morning, praying for sanity and for darby... just for help. Darby is finally asleep and I find myself having a quiet moment so I decided to open up a devotional book that I keep handy. I even laughed to myself as I went to the "May 18th" day in the book... thinking "Do I really think that providentially there is going to be something on this day that is going to speak to my need of today?" I'm not sure I believed there would be.

Sure enough.

"We were under great pressure... so that we despaired even of life... But this happened that we might not rely on ourselves but on God, who raises the dead. 2 Corinthians 1:8-9"

Here was the poem that followed, that spoke to my heart.

Pressed beyond measure; yes, pressed to great length;
Pressed so intensely, beyond my own strength;
Pressed in my body and pressed in my soul,
Pressed in my mind till the dark surges roll.
Pressure from foes, and pressure from dear friends,
Pressure on pressure, till life nearly ends.

Pressed into knowing no helper but God;
Pressed into loving His staff and His rod.
Pressed into liberty where nothing clings;
Pressed into faith for impossible things.
Pressed into living my life for the Lord,
Pressed into living a Christ-life outpoured.

I have never been one for poetry... something about it always made me feel awkward. Yet, this poem really spoke to me. It kind of gave a voice to the craziness in my head. Pressure. Thats what I was/am feeling. Thats what this person felt, and this is how they responded. They did what Paul spoke of in Corinthians, and turned to God because its what they had to do and what that pressure was meant for them to do.

It was a good reminder for me :0) and I thought I'd share it with you.

Reflections

Yesterday, Darby had his 1/2 birthday :0) He's 6 month's old! That mark started me thinking...

1. Yay! I've gone 6 months with breastfeeding... kind of. It might be TMI but its okay. Darby and I never really got a hang of breastfeeding. After his birth, literally a dozen nurses and 1/2 a dozen lactation consultants later, we couldn't get it down. We tried EVERYTHING. It just wasn't working. So I decided to just pump and bottle feed. It ended up being the right thing because Darby had to take medicine in a bottle with his milk and it worked out just fine. But its been really hard... I'm connected to a machine instead of just being connected to an infant when i travel, and i have double the amount of bottles and pump parts to wash constantly during the day... but it has its perks too. I don't have to always be the one to feed the baby! I can go out for the evening or sleep in late, and someone else can warm a bottle and feed him. I read a statistic the other day, 60% of babies are not breastfed past 8 weeks. I figure, I'm doing pretty good then. I also think it might have something to do with how healthy darby has been as well... like cold sickness and whatnot. We have been in and out of the hosptials 3 times already and darby still hasn't even had a cold. The fact that I live with him in the hospital, create antibodies, and feed him, I think it helps :0) or I try to tell myself that at least.
However, I did think of it the other way... I have to pump at minimum 3 times a day, and for another 6 months (a lofty goal), oye.... 530 times left at least? Yuck. ;0)

2. I can't believe its been 6 months. Only 6 months? Haven't we had Darby forever? And yet, I completely remember the days when Jason and I could just spontaneously go out or spend the night somewhere without having to plan and pack a whole ton of things. Or even when I used to be able to run in to the post office and buy a couple stamps, or go to eat fast food that wasn't a drive thru (like subway... i miss subway).

3. I think about how my life has changed a lot in the last 6 months. Its all been for the good. I never would have expected all of these changes, but I welcome them because they are good. We still have a rough road ahead... lots of what ifs and probably some more difficult times, but we're going to be okay... not only okay, but probably absolutely great :0)

4. darby's stats:
-19 lbs (about 75th percentile)
-27 inches long (about 90th percentile? but it might not have been accurate)
- He can see us and hear us when we walk in a room.
- He's getting his fingers in his mouth and playing with his pacifier.
- He has figured out how to get some things in his mouth... not always, but sometimes he gets something in his hands just right and tries to pull it to his mouth.
- He's getting on his side, from his back, but hasn't rolled quite yet.
- He's holding his head okay, and when he sits up, he kind of folds in half... but we are working on it!
- He's eating sweet potatoes, prunes, and pears. Although since his eating habits have decreased significantly this last week or so, he hasn't had any 'solids'. We're lucky to get 15oz of breastmilk in him!
-He found his tongue this week! And just in the last day or two he has learned to raspberry! I find it impressive because I can't do it.
-He is a talker! Chatty chatty chatty... he mostly moans (we try to think of it as singing or something more pleasant) and when he gets his fingers in his mouth it turns to babbling. More often then not, we can leave the room and then hear some strange new sound and run back to see that it was darby... smiling and figuring out new sounds that he can make.
- He is such a happy baby. Maybe even abnormally happy... he really rarely cries. Maybe we're just too attentive and don't really make him wait long before we get him something that he needs or wants.
-He's a little behind, but we believe he'll catch up one day. We have to believe it! I can't imagine my little guy actually crawling or even walking around... its almost unfathomable! But wouldn't it be great? It might take a little longer than his friends, but darby will get there :0)

Happy 6 months baby boy!