Lost in Learning

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Videos of the Kids

Cpc playing the Wii.

Cdc in the Johnny-Jump-Up.

Wishes and Time

I wish I knew where to start. I wish I could capture all the feelings I've had over the past 2 1/2 weeks. I wish I could rewind and do some things differently. I wish I could fast forward and see the product of some of the things that are happening. I wish I could just slow down some of the moments we've been having long enough to keep my cool and analyze what is happening.

But I can't.

The day before Cdc got out of the hospital Pmc finally got two job offers. Good thing he hadn't gotten them before, or he might have lost them. He accepted to Countertop installation job. That day he also met with the Stake President. I was supposed to go too. He was called as Elder's Quorum President. He is now a very busy man!

Last weekend we celebrated three of the four people in our family.

Cpc turned two. We had our playgroup over to play in our backyard. We set up the sprinkler and let the kids go to town. They had a blast. Cpc got a 10-inch bike with training wheels, and a giant bag of blocks for his birthday. He loves both. He still has his passion for life and exploration. But it is in misfire mode almost all the time these days. He's not getting nearly the sleep he needs. He's clumsy and whiny and has more tantrums than I can count each day. My heart aches for my beautiful boy. He finally had his OT evaluation on Thursday. We were right. He has Sensory Modulation Disorder, which is a form of Sensory Processing Disorder. The Occupational Therapist was so kind to come over the morning that he was leaving for Disneyworld, because it's the only time he could fit it in before he left, and he understood just how important this is. He gave us a few pointers to help him, and they are helping....just not with his sleep. I could go through a whole list of things we've tried. Most have them have helped, but only for 2 weeks at the most. Then they stop working. I can't express how tired I am of seeing a light at the end of the tunnel, only to discover that the train I'm on turns down a different tunnel. I hate watching that glimmer of light fade away. We are all exhausted here. Mostly me. I just want a sleep routine. I want to go to bed at a decent hour, and to wake up early so I can exercise and read scriptures uninterrupted. That sounds to me like the most luxurious thing on the planet these days! I also just want to enjoy each day with my kids. I want to work hard with them, and laugh and play with them. And we do, but each moment is slightly tainted by the exhaustion and fear of what will happen next. It's hard for me to be writing all this out when I want to express how wonderful Cpc is to me. But I also know I have to be real, and express how hard this is. I need the details because I know they are the things that will help us find answers and help.

Sleeping and sensory activities. The shaving cream is on Cpc's blacklist.

The Playgroup Birthday Party. Cupcakes and waterplay!!!!! What could possibly make a toddler happier?

Birthday Blocks.

We also celebrated Pmc for Father's Day! Oh how I love this man. I desperately want to express the feelings of my heart about his Fathering skills. But I can never find the words. He is so dedicated to his children. He desperately wants to be a good Father, and he works hard for it. He understands his role, and he is living it! We got him a photo book for Father's Day, with pictures of him being a Dad. He is constantly with these two beautiful boys, teaching them and loving them, and disciplining them. He has been so much more patient with Cpc than I have, and only recently has he started getting as exhausted as I've been for months. He has a Father's intuition, and knew from the get-go that Cpc needed to be tossed around and rough-housed, but that Cdc needed gentleness and tenderness. He takes the boys on Daddy dates, and lets them help him with his jobs. I am so grateful to be married to a man who is dedicated to his role of Father and is true to our eternal family.

My birthday came next. I am 27. It doesn't feel any different. For some reason I've been telling people for months that I'm 27. I kept thinking I should be 28. Boy am I glad I'm not! I got two great gifts for my birthday, only one of which I am going to talk about. I got a Tap Dance dvd. I've been telling Pmc since we got married that I've always wanted to tap dance. I've taken classes here and there, and I have shoes. But I want to be regular at it. I want to do that for exercise. Pmc thinks I'm lame, but he got it for me anyway, and I can't tell you how much that means to me. I know I'm loved! Too bad my tap shoes which fit perfect before my mission are now too small. Do your feet grow when you have kids? This stinks!

Tomorrow we are celebrating Cdc. He is 5 months tomorrow. I cannot believe how fast this has gone. The weird thing is he's hitting all his milestones at once. When we got home from the hospital he suddenly started rolling over both ways. He gets up on his elbows on his tummy and plays with toys. He gets himself stuck in awkward positions in his cradle, so we've finally moved him to the crib. He already can't do the trick anymore. Lame! But he is so fun. He is so interactive, loving and playful. He giggles at anything and smiles at everyone. He still sleeps amazing, although not as good as before the hospital. He is happy to just have me carry him around all day, so we're making great use of the Bjorn. His hair is absolutely gorgeous....blond as can be, and coarse. If there's any light behind him, he gets this beautiful glow. I love it. He is not nearly as photogenic as Cpc was, but in person he sure does rival his brother!

Cdc LOVES the johnny-jump-up!

He's become a thumb-sucker through and through. He loves his new stuffed dog too.

There's the golden crown!

Now that I've gone through all that, I feel so much better. When I see Cpc sleeping, all my frustration melts away. I value sleep so much more than I used to. I am determined to find solutions for my son, and no longer wallow in sorrow, wondering if I'm just crazy or a bad mother. The OT said that Cpc would be a lot worse off if we hadn't worked so hard on many things. I know I'm a good mother. I have worked really hard with Cpc. I prepared well for motherhood. I know kids. Someday I'm going to know SPD, and Cpc will integrate just fine. But for now, I've got to take it one moment at a time!

Homeward Bound

Probable answers. That is what we have, and to me that feels heavenly! Especially with Cold Stone to celebrate!

So after an interesting night last night, in which a nurse told the doctors that she saw him going pale and his lip drooping (which she didn't tell me and I didn't see, even though I got up every time she came in the room) - the doctors decided to check for reflux even though he showed no symptoms of it. So they fed him some chalky liquid and x-rayed him swallowing it. Ta-Da!!!! Large esophagus found, meaning he has reflux (and now we've discovered that he actually does have some of the rare symptoms).

Apparently it is possible that in order to prevent him from choking on his stomach acids and food, Cdc's brain has the capability of telling him to breathe less/shallow. So since all other avenues have come up fruitless, this is the best explanation. So we are going to go home on the morning treating reflux and hoping that it is the RIGHT explanation!

We would have gone home tonight, but they did one extra test to make sure he doesn't have a hemangioma in his windpipe. It was clear. There are some tests we won't get the results of for a while. But for now we are going home with some semblance of confidence! We feel blessed, protected and loved! We are grateful for a healthy little boy to take home with us! We are also grateful for all of the expressions of love we've received, especially prayers! Thank you all!

PICU night 3

We only had to stay in the PICU two nights last week. Looks like it is three this time. I wish I had more to report. I don't except CDC had a spinal tap today. He is still attached to the EEG in hopes of catching an episode, but Alas, I am losing hope of that after two unsuccessful days of it. They are going to remove it tomorrow, and in all likelihood send us home. I am slightly terrified of going home not knowing what is wrong, but I don't want to stay here waiting for another episode that could never happen - especially since so many of the doctors were so inclined to say they were seizures.

I trust that we are in our Heavenly Father's hands.

ER to PICU - again

We are settled in to the PICU for the night after a long day. CDC had a total of 7 episodes today. He is exhausted, as am I. Pmc is home again with cpc tonight. We are handling all of this very well I think. I believe I have been prepared for this, and am being supported each moment by everyone's prayers. CDC is hooked up to the EEG for the night, and is being recorded on camera too. They think he is having seizures, but I can't even remember all the tests they have done to make sure it isn't anything else. I am grateful for a fantastic hospital and great doctors. I am especially grateful for a certain doctor who came in just to see him even though she was off duty, just so we wouldn't have to worry about the other doctor that we were pretty uncomfortable with! I love being a mother! I am so grateful for this role and all that I am learning. I am also grateful for the way it is bringing pmc and I together. I would say our marriage is better than ever right now! I adore pmc, and am so grateful to have him by my side as we go through this together!

So, here's to a peaceful night, and an episode on record in the morning so we can finally get to the bottom of this!!!!!

ER AGAIN!!!

We are in the ER again. CDC had three episodes in two hours this morning. They aren't as severe, but scary nonetheless. He had another one here, and now we're doing the typical hospital thing - waiting! Right now we are waiting to get admitted. I am learning to use the Ipod for everything! I am grateful that we have it, and that technology allows us to keep everyone updated. I am grateful that I can simultaneously hold my baby (who needs me) and let all our friends and family know what is happening. I know that your prayers are helping...all of you! Thank you! I feel so much peace! Keep them coming!

Lost in Learning

"True learning is INNATE and passionate. It requires neither coercion nor cajoling. It springs naturally from our desires to grow, to create, to master, and to make meaning of life." ~Adam Timothy (Lost in Learning, 2010)

This has recently become my very favorite quote! You see those pictures over on the right side of the blog still? The ones by my dear friend/cousin Eva Timothy? Well, she is publishing a book. Her husband wrote an essay that goes along with her Fine Art Photography focused on some of the greatest figures in history.

I am devoting an entire post to this because Pmc and I have both come to the conclusion that this is a MUST-HAVE book for us, and we believe the same for our friends and family. This philosophy is at the very core of my soul. I have always craved knowledge and intellect. When people ask me what my favorite food is I tell them "anything I haven't tried." Why? Because I love learning new things through my senses, including taste! I love trying new things. But sometimes I let my fear overcome me and I don't let myself grow, create and master those things which are possible.

I've spoken many times about how much I love Cpc's passionate desire to discover his world. Sometimes I squelch that desire because I have an agenda for him. But I am not learning how to let go of my agenda, and get on board with his for discovery. That doesn't mean that I shut out discipline and work....it just means that our days are full of much more fulfillment and joy!

Furthermore, Eva's images have been nominated in the PX3 International Photography Awards in Paris. The winners are chosen by popular vote, so feel free to register here, and then view the images and vote here for her work if you feel so inclined!

You'll also find a new little button on the right-hand side of the blog for her book. It is being published this fall....I'll let you know where you can get it!

The Dust is Settling

So when we first got home from the hospital (just after Noon on Wednesday) I hardly knew where to pick life back up. I think the shock from the whole experience finally hit me, and all the different outcomes that could have taken place settled in my mind. I took a nap, which helped, but I still felt unsettled and confused. Pmc and I had a good long chat. We discussed how much this event has affected us, and Cpc. Cpc had been in a routine: playground visits, chores, learning time and potty time, sleep. Things were going so well for him. Suddenly he was whining all the time and fighting bed again.

Cdc was exhausted and happier than ever to be home. We could tell he was much happier to be home. One fantastic thing did happen at the hospital, Cdc rolled over for the first time. He hasn't done it since, though he's come really close. He also is enjoying tummy time more. Cpc had a bit of an easier time going to bed with me and Cdc home. That night Pmc felt a migraine coming on and went to bed. I on the other hand suddenly felt the need to get life back on track, so I stayed up until 1:30am tidying the house and getting a few things done. By the time I went to bed I felt so refreshed!

Cdc hasn't had any more episodes, and we're hoping it stays that way. Cpc is back to his routine, and his evaluation has been rescheduled for next week. Pmc is on his way to get a drug test for Tru Green who apparently decided they want to hire him, even though they never called him back. I am blogging, in case you couldn't tell, which means the dust has settled....at least for now!

Cdc's PICU stay

So, clearly Pmc never found the time to post more details! Not that I blame him, it was kind of a crazy week!

The intimidating equipment for making sure my baby was okay.

All of that bandaging just for his IV, and the computer screen I stared at most of the day for three days.

At about 10:30pm on Monday a nurse came in and said that unless alarms went off they'd pretty much let us (Cdc and I) be so we could get some rest. At about 2:30am a nurse came in and started administering Amoxicillin to Cdc. I was half awake when I saw her and asked what was going on. She said a doctor had noticed an ear infection. I nearly flipped. I asked why nobody had told me this and asked to know which doctor. She had already given the dosage, so I couldn't do anything but tell her I wanted to have his ears rechecked because nobody had mentioned an ear infection to me. I was really frustrated because of being woken up, but also because I'm allergic to Amoxicillin and if there's any chance that it's genetic, I didn't want another problem in an already bad situation.

Another nurse came in at 4:30am to check his vitals and I thought what happened to being let be? At 7:30 our original nurse came in and said to make sure not to feed him so that his tummy would be empty for the MRI. WHAT? I was so frustrated because I didn't remember anybody telling me he'd be having an MRI, I had just fed him, and I began to feel like nobody was communicating with me. Then she said they weren't sure there would be an opening for an MRI that day. So now I was expected to not feed my baby on the off-chance that he'd be able to have an MRI sometime that day. Lovely. I was so frustrated with the lack of communication, so I told the nurse that I really needed the doctor's to communicate better with me.

Finally a Dr. came in and checked his ears, sure enough they were just fine....no more Amoxicillin.

Just as Cdc started to really get hungry again, they came in to do the EEG. I sat there with tears streaming down my face, trying to hold my wailing baby still, as the technician hopelessly tried to get the little things stuck to his head. I know that kids are really resilient, but is it really impossible to try to work around the kids a little. Wasn't there some way of scheduling the EEG so that he wasn't starving, and wasn't this all on an off-chance of being able to do the MRI anyway? I just felt it was too much for my child, and I told the tech so, as she kept sticking little things to his head.

A tender mercy came though when just as they were finishing the test, Pmc showed up to comfort me, and a nurse walked in and said we were scheduled for an MRI in a half-hour. So we cleaned off Cdc's head and headed out. When we got to the MRI floor Pmc and Cpc sat in the waiting room while I was told about the test and signed consent forms. I hardly knew what to do when the Dr. told me that they needed my consent to give him the drug (needed for the MRI) that isn't approved for kids but they use it all the time anyway. Lovely. They said it can have bad effects on his kidneys. Great! I asked a few questions and then prayed that everything would work out okay as I signed the form. At least I felt some peace from the spirit!

Anyway, all the tests came back negative (meaning they couldn't find anything wrong), and instead of getting transferred out of the PICU we just got sent home! I'm grateful that our Memorial Day didn't turn into a different kind of Memorial Day for us. We had these great plans to have an FHE lesson on Family History, but we are now just grateful that this story had a happy ending for now....part of our own family history!

Home and Happy!

The bruise is from one of the blood-drawing spots. And you know how I LOVE Cpc's shoulder dimples. Cdc has elbow dimples that we love just as much! I'm grateful that Pmc took lots of pictures of me during this whole episode. I am not always great at remembering to get pictures of me as a Mother.

Oh, and I can't forget that Cpc is obsessed with the camera lately. This is one of my favorite pictures he's taken so far. Luckily he hasn't deleted any important pictures yet, but he's taken at least a thousand pictures in his short lifetime!