Rule #111: Let the sunshine in

Lest you think our house has become nothing but worry and stress, here are a few pictures showcasing what else we've been up to since the sun decided to join the world again.

Alex has gotten bonsai fever again.

We've also been planting trees like crazy. Five trees just this week!

These first two are coral bark maples

A shade tree for the backyard. There are two like this.

A nectarine tree to replace the one from last year that died.

Chillin' in the backyard

Park playing

Making awesome look easy

Rule #110: The sooner the better

I finally heard back from the neurosurgeon on Thursday. After much effort on my part. I still think Dr Kestle is a very nice man, but the office system is an absolute joke. I called so many times Wednesday and Thursday, just to get to talk to the Dr to see what was going to be done. It shouldn't be like that. And I'm not upset that Dr Kestle seemed to forget to call, he's a very busy man. And I'm positive if he had been given the message, he would have called right back. Sigh. I hate being an outpatient. If we have to be a patient at all, I'd rather just be inpatient.

That being said, I now know the plan for Graham. Dr Kestle consulted with his fellow neurosurgeons and decided that it's most likely that Graham had an arachnoid cyst that ruptured, and that's why there is fluid on both sides of the membrane.

The first priority is to remove the fluid in the subdural space, since it's supposed to be completely empty. This may or may not also drain the fluid in the arachnoid space. We might also discover that as the fluid on the outside of Graham's brain drains, he may start accumulating fluid on the inside. Which would mean moving the shunt from the subdural space to the ventricle. Dr Kestle couldn't tell me how likely this scenario was, just that it was a possibility. I appreciate being well informed. I would not do well being blindsided a few months from now.

The radiologist also believes that Graham's frontal lobe didn't form properly. It's too thick, and doesn't fold in the right ways. It could look like this from all the pressure/fluid on it, but the radiologist doesn't think so. He thinks it's cortical dysplasia, which is associated with seizures. (I know, just what I wanted to hear right?) He doesn't think the risk of seizures warrants putting Graham on anti-seizure medication right now. But if he does seize at some point in his life, it would be a likely cause.

As far as surgery plans go, they will place a subdural shunt that will travel behind his ear, down his side and end in his abdomen. The CSF that drains with then be absorbed in his abdomen. I was told that recovery time was one to two nights in the hospital. But I have a hard time believing that. Surgeons often underestimate how long recovery really takes. I'm hoping no longer than 4 days.

I'm still working on accepting a shunt, because I really didn't want one. But it is what's best for Graham. It's possible the shunt will come out after a few months, or he might need it for the rest of his life. There are still a lot of unknowns, but I am grateful that surgery is only three days away. It will be so nice to get this part behind us.

Rule# 109: Appearances can be decieving

We met with Dr Kestle, a neurosurgeon, today. I wish that I could say exactly what is in Graham's head, but it's still unclear.

The MRI that we had done on Thursday wasn't consistent with an arachnoid cyst like we thought it was. It's still fluid,so it's not a tumor-like mass. I'll try to explain it as best I can, but bare with me. It's about to get complicated. :) I drew this picture quickly while at work. I realize it's small and difficult to read, but it can just be an illustration to look back to.Normally CSF stays inside the arachnoid membrane, surrounding the brain. With Graham, for unknown reasons, the CSF is on both sides of the membrane. It doesn't appear that the membrane has created a pocket filled with CSF, which would be an arachnoid cyst. But somehow the CSF is leaking into the dura space as well. All of that fluid is significantly pushing his brain off to the left. It truly is a miracle that he isn't compromised from all of that pressure. I look at him, and I'm just amazed and what a happy, seemingly healthy boy he is. Looking from the outside, I never would have guessed/known.

What all the ends up meaning, is Graham is going to need a shunt from the outside of his brain, down to his abdomen to drain all the fluid. He might only need it for a few months, or he could need it for the rest of his life. There's no way to tell at this point.

I'm bummed. I really didn't want a shunt. Like, REALLY didn't want one. I have to keep reminding myself that the shunts I see are for different reasons, on sicker kids, and complications don't always happen. They wouldn't keep doing shunts if they weren't successful MOST of the time. So this is what I'm working on accepting.

Throughout this whole process, I have never once feared for Graham's future, I have always felt/known that he will be fine. It needs to be fixed and he will be fine. I was hoping for a different kind of fix, but regardless, the outcome will be the same. I know it will. The Lord will take care of my son. I have no doubts. That doesn't mean I've embraced the shunt, or that I won't be anxious for surgery. It doesn't even guarantee that he won't have any complications. But in the grand scheme of things, I know that he will be okay.

Dr Kestle wants to show Graham's MRI to a few of his colleagues, get second opinions and make sure they have the best course of action for surgery. I appreciate this more than I can say. I'm grateful that he is humble enough to ask for help when he may need it. It gives me great faith and confidence in his ability to help my son. I should know the consensus on Wednesday afternoon, and hopefully we will schedule a surgery date as well.

I'm ready for all of the waiting to be over. I'm ready to have the nightmare of surgery and the hospital recovery just a horrible memory. I wish I could just *poof* to future time in Graham's life. But since that's not the point of this life, to skip the hard stuff, we'll just deal with what we're given and be grateful for his overall health and temperament.

Thank you for the continued prayers and overall support. Keep the prayers coming, they can do nothing but good for my son.

Rule#108: Deja vu is overrated

Graham got to experience deja vu today as he prepared for his MRI for the second time this week. Poor kid. A few things in life are worth repeating, but fasting as a six month old is not one of them.

He actually did fairly well. We discovered that Graham will NOT touch pedialyte. Not even if he's starving. Good thing he's old enough now that he could have apple juice diluted with water to count for his clear liquids. He was even able to take a nap during his fasting period. He's such a good kid.

We got to the hospital, and I was worried that the same callous nurse that sent us home tuesday would be there again today. It would have been very awkward for me, I was kind of dramatic last time. (not on purpose, I was just devastated beyond my control) Thankfully, she wasn't there. The nice receptionist remembered us, and apologised again for tuesday. And the rest of the staff was wonderful.

They took Graham to get checked out by the NNP and chart his vitals. He smiled and played the whole time. Was very interested it all the new toys :)

He thought the oxygen tubing was awesome! I just loved seeing how focused his hand-eye coordination has gotten.

Despite being hungry, he waited as patiently as I could have hoped for. Better than I had hoped for really. If it seems strange that I'm smiling prior to my sons MRI, it shouldn't. Not if you know me. Information is power, and I was about to gain some more power over my son's fate. I was anxious, but excited.

Graham didn't even cry when they placed his IV. He whined a little, but whined and fussed the most while they were tapping his IV in place. The nurses said he was by far the best patient of the day! That's my little ball of happiness!

What in the world is this THING on my hands?!

The medication that they gave Graham to sedate him works incredibly fast! I was holding him in my arms, and I swear, ten seconds latter he's passed out, slumped back, breathing deeply. That is some powerful stuff!

They whisked him away and set him up in the MRI machine. They wouldn't allow me to stay and watch, which I was bummed about. But there was another MRI going on and they had to protect patient confidentiality. blah blah blah. Oh well. I'll get over it.

The MRI lasted about 30 minutes. Alex and I got some dinner while we waited, I was preparing to work my shift later that night and knew that was the only chance I was going to get to eat.

The recovery went very well also. What else would you expect from my little rock star? I mean really, he's just amazing. He slept for a little over an hour, and then the nurses woke him up. They found out I was working that night, and wanted to try and have him wake up before I had to leave.

He was a tad bit cranky, which is a common side effect of the medication. But he drank more apple juice and then finally actual formula! I think he was pretty excited about it, but he couldn't show it because he was still a little drugged. By the time I had to go to work, he was able to go home as well. It was perfect timing. I am so grateful to have this MRI over with. They wouldn't tell me what the MRI showed, because they aren't trained to read them/they aren't supposed to. But I was able to coax a little bit of information out of the nurse.

I asked if it was as big as they thought, to which she looked at me, paused and replied "it's...significant in size." She also thinks he may have an ear infection. Which surprised me. Graham hasn't seemed uncomfortable or irritable at all. But then again, he's a ball of happiness. I'm not sure if balls of happiness are capable of those emotions. :)

While I do wish I knew exactly what the MRI showed, I'm okay to wait. We have an appointment with Neurosurgery on Monday, and we will get some answers then. I'll actually get to talk to SOMEONE who will know what we can do for my son. I'm excited to have a plan, even though that plan with involve brain surgery on my baby. At least the cyst will be taken care of, and I will be able to breath again.

Rule #107: Fasting is not just for adults

This weekend was lame. I went back and forth between peace and anxiety/fear. I don't do well with minimal information, or a lack of a plan. I just don't. My mind can't go forward, because I don't know what that forward is, so I have no other options but to go back and forth between emotions. I just felt stuck.

While I don't have all of the information yet, and I still don't know when surgery will be or what type of surgery even, I finally have a date for the MRI.

They were looking for a morning appointment, because Graham will have to be fasting...so it was over a week away. (Which I was not okay with) But he only has to be fast for four hours, so I scheduled the MRI for 3:30 tomorrow. He usually takes a pretty good nap in the early afternoon, so hopefully he'll be asleep while he's fasting.

I'm so relived to have a date for the MRI. But now comes a whole new variety of anxiety.

I'm nervous. I won't lie.

If the cyst was large enough for them to find it on ultrasound, how big is it really? Where exactly is it? What will these answers mean for surgery options? The trouble with me is I know too much. But the real trouble is I don't know enough, I need more facts. Until I get all those facts my mind is racing a million miles a minute.

Looking at Graham you would never know he has something pushing on his brain. He's still just as happy and joyful as ever. He is still sleeping/eating/playing well. All that I could ask for.

Thank you all for your prayers and concern. We appreciate it very much. I am not sure how quickly after the MRI I will have more information. But I'll try and let everyone know when I do.

Rule #106: Nothing good comes from spiders

We just got back from Graham's head ultrasound. He did really well, flirted with all the ladies and found the screen fascinating.

They discovered that Graham has an arachnoid (spider, get it?) cyst on the right side, that's quite large apparently. He needs to have an MRI done to better see the size and to get a plan for how to remove it. Which means he will need surgery.

Sad.

Since Graham isn't adversely affected by the cyst at this point, it's not an emergency. But it is something that needs to be taken care of. His brain looks fine, albeit pushed over to the left side. But since he's a baby, his brain is pretty mailable, and can handle being pushed over for the time being.

I'm grateful that it's not emergent. But the thought of my baby being intubated and sedated makes me sad. I'm grateful for a pediatrician who is proactive.

We're not sure when the MRI will be or surgery for that matter. But when we know more, you'll know more. :)

Rule #105: Some babies are off the charts cute!

Six months ago, this was what filled me with joy in the middle of the night.

Now it's this face that fills me with joy in the middle of the night. Yes, he still isn't sleeping through the night.

Graham had his 6 month check up today. He is doing very well. Here are his stats.
Weight : 16 lbs 14 oz (40%)
Length: 26.5 in (55%)
Ofc: 18.5 in (>95%....off the charts)

That off the charts business is going to cause a bit of an issue in a few days. Because his head is growing so big so fast, Graham will have a head ultrasound on Friday to make sure everything is a-okay.

Calm down mom, he's fine. :)

Most likely it's nothing but some extra CSF around his brain, but that things are still draining properly. It could be a cyst. But he acts so normal that I'm not concerned in the slightest. But I do appreciate having a pediatrician willing to check things out anyway.
Here's proof that my son is a rock star! Look at him lift up his huge noggin without any trouble :)
He can roll over from front to back. And his head doesn't even make him come crashing to the ground either. It's usually a nice gentle roll. He is so close to sitting up. And he loves the view. He is getting better hand control everyday. It's so fun to see what new things he has discovered this way.
While Graham is REALLY interested in what Alex or I eat, he could take or leave baby food. Leave it mostly. I'm able to get him to eat a little more than Alex, but that's not really saying much. He just doesn't enjoy it. And having to trick him into every bite, just for him to spit most of it out is exhausting. But, he is 6 months old now, and really should be eating more than he does. Which means, even though I don't like it, I need to make more of an effort to offer him baby food every day. (it's been usually every other day because he doesn't like it at all)
We've also recently discovered who Graham looks like. He has many facial expression that are Dougs, but then I came across this photo of my father as a child. Umm, hello? They look so similar. Big head and all!

Graham has been described by my sister as a big ball of happiness. And it's true. He really is. Evan was content with his world. Graham, well he thinks everything is the best. thing. ever! He laughs and giggles and anything and everything, and is always quick to give a smile.

Here he is his trying to hold Jane's hand

I love this face. It looks like he's shouting "I did it!! I touched a girl!"

My kids are the greatest blessing I've ever been given. I can't imagine my life without them. In most ways it feels like Graham has been a part of our family for much longer than 6 months. I can't wait to see who this little munchkin turns out to be!

Love you Teddy Graham

Rule #104: Organization is subjective

Alex and I have one way of organizing the toys in Evan's room.

Evan has another way entirely.

Most mornings I find his green storage bin filled will ALL of his toys. Every morning. It's gotten to the point where I'm not even willing to put them back in the bins on his shelf. Sometimes I still do, but it's always a short lived motivation.

The other way Evan organizes I can relate to a little more.

He started lining up his toys in the living room. Starting with Graham. (who he often thinks is a toy) He placed the bath sponge on his head, and kept going from there. I tried to "adjust" one of his toys, he got mad, and put it back in it's place. At least he comes by his OCD honestly. I just hope it doesn't get any more pronounced as he gets older.

Rule #103: Easter is not a person

I am loving Evan's personality as he gets older. I can tell that holidays are just going to keep getting better and better.

This year we were planning on taking Evan to an Easter Egg Hunt (for fun and for therapy). We stayed out later than usual with friends, he didn't go to sleep as well at their house as usual, and then was talking to himself at 2 am after we had gotten home. Plus we have a 6 month old who still gets up in the middle of the night. So when our alarm went off that morning I looked at Alex, and asked him how much he cared if we went to the egg hunt or not. Being the Parents of the Year, we opted not to wake ourselves, or our children up so that Evan could have a anxiety attack in the cold weather.

Evan slept in till 11, so I feel that we made a good decision. A few hours later he talked about going to Easter's house. (We had mentioned the easter egg hunt the night before) Feeling a slight twinge of guilt (but not enough to have done it differently) we decided to have our own mini hunt in our yard. We quickly filled some eggs with candy we already had in the house, and set them in rather obvious places in the yard :) Evan had a great time. He was a little disappointed when there were no more eggs to find, but got over it quickly when he realized the eggs were filled with candy. He kept calling them Easter's eggs.

He found his small presents in our room a few days ago too.

"Open this? Open this!!"
"We need to wait for Easter to open them"
"Go to Easter's house and open this?!"

I've tried several times to explain to Evan that Easter is not a person, it's a holiday. He clearly isn't grasping that concept yet. :)

Feeling the need/desire to be festive, we tried dying eggs with Evan for the first time too. I think he's a bit young still. He had a hard time waiting for the color to set, or waiting for them to dry, wanting to put them back in the colors....regular two year old behavior I think. Other funny things Evan has been saying that have nothing to do with Easter....

~He tells me almost daily that Jesus is at the door, or that Jesus will ring the doorbell and it's not Lisa (his therapist). Oh, and Jesus says "boo" (I'm really not sure where that one is coming from)
~When it's morning he tells me "windows are on, it's daytime" and how the "windows are off, it's nighttime"
~He would live outside if we would let him, and doesn't enjoy the restrictions his baby brother puts on his playtime. But it has just been too darn cold to take Graham out for any length of time. So throughout the day, he will tell me that "Graham needs to take a nap and Evan will go outside."
~If he wants me to say yes to something he knows I'll say no to (probably because he's already asked half a dozen times, and I've said no!) he pulls up his eyebrows, eyes big and wide, nods his head vigorously and asks his question again, ending in "yeah?" Usually I just end up laughing, but still say no. :)

Like I said, I'm loving his personality. He's such a riot!

Rule #102: The past can't compete with the present

The memory is an amazing thing. There are moments in your life that you carry with you, just as if they happened yesterday. And yet, there are things, that while important at the time, you have difficult time recalling much detail at all.

I was talking to a fellow nurse last night at work. Talking about our children mostly. She was discussing how her 5 year old freaked out at the Grizzles game, covering his ears the ENTIRE time, and how they can't go to Bees games, because the mascot freaks him out. He spends the entire baseball game on edge, watching out for the giant bee. :)

That brought up Evan and his unique personality/issues. She asked me questions about it, asked how I knew something was wrong. I started to tell her, but couldn't describe it as well as I used to. I mentioned that he wouldn't mimick, and didn't care about his world around him, poor to no communication. But I couldn't really elaborate.

Really?

His delays and lack of communication consumed me! How can I not remember what it was like for my child to not care? Have I really forgotten how it started?

That's amazing.

While looking through older posts trying to compare Graham to four month old Evan, I stumbled upon this post That was almost a year ago. What a difference a year makes! I'm surrounded by the present Evan, that I've forgotten was past Evan was like.

Evan now is practically "normal" in most ways. He's only slightly delayed (a few months) in most areas. He's one smart cookie and talks non-stop. And boy does he CARE about his world, and he has opinions! Not to mislead you, he still has Auditory processing disorder, but he's like a new kid! He is still working with Early Intervention, but that's mostly because he loves Lisa and I can bear to take her away from him. ;) They would have let us stop a few months ago, but it's still helpful for him, and he loves it. We'll reevaluate again near his birthday.

Some of his biggest hangups now, are social. Case in point: Sanders birthday party. For reasons unknown to me, he lost his mind at Emilie's house. It wasn't too many people, or too much noise. It was nothing that makes any sense to me. But after GREAT efforts to calm him down, and a walk around the neighborhood, he came back into the house, and promptly went downstairs. Alone. And stayed there the entire party. He didn't want cake or company. He just needed to regroup from....whatever it was that set him off in the first place.

It's moments like this that do remind me of his unique personality. Sometimes I forget a little because he has improved so much. He will be starting a music group this month, and I am excited for what this socialization could do for him. I have hope that with time/age and continued therapy he will get even better, and then my future self won't be able to remember what my present self is so focused on. Maybe a year from now I'll be writing another post, referencing this current post ;)

Memory is such a fickle thing.

Rule #102: Dr Seuss rules

Big G little g, What begins with G?

Graham's Gigantic noGGin,

G..G..G

Graham had his four month check-up two weeks ago. He's doing well, growing well, and his head is huge! :)

Weight: 13 lbs 9 oz (20%)

Height: 25 3/4 inches (80%)

Head: 17 1/4 inches (90%)!!!

This week I've been overwhelmed with how lucky I am. I have two healthy, happy boys that the Lord has trusted me with. I don't know what I would do without them. Not everyone gets this lucky, and I don't ever want to take it for granted. (remind me of this when I start potty training Evan)

What Graham's been up to:

~He coos and giggles all day long

~thinks Evan is the funniest person on the planet and loves to watch his every move

~As of a few days ago, he can now roll over from front to back. He gets such a kick out of it too. I've never seen him so happy to figure something out!

~He can grab hold of toys within his reach, and every day gets a little more control of those cute hands.

~Has given us a few nights of full sleep. Still not a habit yet, but it's getting closer!

~Loves to cuddle and is so happy all of the time, well, most of the time :)

~Has started having some stranger danger anxiety.

~Eats like it's going out of style :)

On that note, in a previous post I had talked about my struggles with breastfeeding. I continued to fight for every drop, and had placed it in my mind that I would like to make it to March, to try and get him through most of RSV season with my protection. Not even a full 24 hours after deciding that, my supply to a turn for the worse. But I just wasn't ready! I wanted to get to March! Then a small miracle happened. My supply rose just slightly, and maintained through all of February. On March 1st, I barely made two oz. (that's practically nothing). So, with a little help I made my goal of providing milk until March. I'm still pumping about 2-3 times a day, if there is a little milk to be found, I don't want it to go to waste. But he's basically a formula fed baby now. I'm jut thrilled that it lasted twice as long for Graham!

I don't look the best, but here is my four month old fatty, grinnin'. It's the look you'll see most often on his face these days :)

Rule #101: It's who you know

After I decided to make this blog private, I worried that the few people who follow it wouldn't know when to check for new posts. I blog so sporadically that you're never sure if there is anything new or not.

Then my sister started emailing me when she updated her blog. I thought that was a great idea, and set it up for my blog. I found out that Blogger has a limitation of 10 people they will email. Lame. Not that I have so MANY followers, but I do have more than 10 family members. I was bummed.

Then my good friend Steve asked to be on the email list, I told him of it's limitations and....he fixed it for me. Granted, Blogger still only emails 10 people, but he worked it out so that I can email his website, and then from there, I can email as many people as I want! It's not what you know, it's who you know...as long as the person you know knows more than you :) (ya know?)

That being said, if there is anyone who is not currently receiving email updates from my blog, and would like to, shoot me an email and I'll get you on that list! Thanks again Steve! You're the best!

Rule #100: Play dates are a must

Evan is finally starting to play WITH other children. It might take him a while to warm up and get to that point, and it might not last the whole time...but there are glimmers of playing together! Not just near each other.

I'm pretty excited for this new phase of Evan's life. I'm excited for him to develop true friendships with friends/cousins. We already know that Sanders is practically the light of his life, but he's starting to branch out in his affections :)

I had the privilege to watch Ethnie's boy Will a few weeks ago. Evan talked about Will for DAYS afterward. He loved having him over to play.

This is Will camera face. That kid cracks me up!

We also had my cousin and his family over for dinner one night, and it was so fun to see how well Evan and Portia (their daughter) played together. Mostly it was Portia who was directing the play and initiating the interaction. But Evan didn't shrink away, or go off into his own space! It was so nice to see.

This is how Graham spends his time during the play dates. He just loves to watch his brother!