A Good Day

Our portion of MRI -- a few hundred dollars
Parking fees at 2 different facilities -- $14
Co-pays for 3 different docs -- $90
Finding out your kid will be fine -- priceless

So Chip has been having some issues w/ his eyes. If you know much about brain tumors, you know that eye symptoms freak out parents of BT kids. I was fairly sure that Chip's problems were just w/ his eyes, but it was still hard not to worry.

Long story short, we headed to ATL this week for an MRI, to see Dr. Claire, and to see a neuro-opthamologist. The MRI was normal (thank you, thank you, thank you). After learning that, we headed to Piedmont to see the neuro-opthamologist. She agreed w/ us that he was definitely struggling w/ his vision, but she wasn't sure exactly what was going on. She was great and very thoughtful and called a friend of hers, a peds opth. at Scottish Rite. He was very kind and agreed to work us in that day. We met him and he quickly assessed Chip, put some drops in his eyes and said he'd be right back to let us know what was going on. We were surprised at his quick assessment and the impression he already knew what was going on (we'd already seen a doc here locally who was stumped as well). He stepped out for a couple of minutes. Upon coming back in, he looked in Chip's eyes briefly again and then sat back and told us that Chip was going to be fine. He said he has ocular motor apraxia. Basically, he can't track objects with his eyes. While we wish his eyes worked perfectly, this is SO TOTALLY something that we can handle! The problem will improve as he gets older and we are investigating occupational and/or vision therapies.

We are doing well (esp. now!!) and things continue to clip along at a quick pace. The kids are growing, are doing well at the sitter's while I'm teaching, and are, as always, keeping us on our toes!! We love the normalcy that has invaded our lives and we are grateful for it each and every day.

Please pray for our friends, the Maxeys. Their 1st daughter, Maddy, and Catie were in treatment together. They lost Maddy shortly after her 1st birthday. They are now facing extremely tough times w/ their 3rd child (2nd daughter). Please pray for Kirk, Natalie, and big brother Grant, as they take sweet Annette home. www.maxeyweb.com

Chipper!

Ok, so he was laughing a lot harder than this before I put the camera on him. Isn't that the way it usually goes??? :)

Odds and Ends

Whew! Going back to work while you still have a baby eating every three hours on the dot can wear a mom and dad out!!! I'm still nursing him a lot, so the nights are mostly mine until 4 or so and Tre' takes over. :) He sleeps pretty well between feedings, but interrupted sleep catches up w/ me after a while, esp. when we have to be up and moving by 5:45 or so. We're supplementing w/ formula twice a day, so tonight, I'm going to try a formula bottle around 11 PM to see if that gives him a longer stretch for the first part of the night. We shall see.

Anne from GA, I had to laugh when I read your comment about the satin pillow working great if you actually sleep ON it!! :) I can usually tell how restless Iz's night has been by the status of her hair in the morning. She is all over the place in bed. But, the satin pillowcase is FANTASTIC when she stays on the pillow!! Thank you to whoever made that suggestion. :) Maybe I just need to get a whole satin sheet set for her!!

Thanks also to Lisa who suggested the book The Spirited Child. I've already purchased it and it's companion workbook. I'm only just starting it, but it's made me laugh out loud several times b/c I feel like the author has been sitting in my living room! Even though I haven't read much, I already feel like I'm gleaning a lot from it. It's given me a different perspective and I love the positive focus it gives to spirited kids! Izzy has so, so many wonderful characteristics and has a heart the size of Texas -- we've just got to help her learn to channel that energy and persistence and determination in the right direction. She's currently outside w/ Tre' blowing off some steam. It's gorgeous outside and outside time is great for her sanity and mine!! :) She has done really well w/ Chip and really hasn't seemed too jealous, but today as I was getting Chip's kisses, she asked for me to get hers... and kept wanting me to do it. I kiss her all the time (it's kind of a game at our house), but it was a reminder for me of how much her world has changed in the last 2 months. It's tough to go from being the only kiddo under the roof to having to share the spotlight w/ a little 2 foot being who needs lots of attention. She's done well though, and I love how much she loves her brother.

After we shared about Izzy's MRI, a couple of folks had asked if we're going to have Chip scanned. We will scan them both once a year until they're 5 -- that's the plan for now. An ultrasound through Chip's fontanel shortly after birth showed a wonderfully, beautiful, normal brain!!! :)

I hope you'll continue to check on and pray for the Morgan ( Ryan and Missy ), Maxey (Annette), and Escoe (Blaine) families. These families are dear to us and they are each walking their own unimaginably difficult journeys. Missy Morgan and her son, Ryan, are both battling relapsed cancer. Annette Maxey is facing a nasty brain tumor and the treatment is tougher than anyone should have to face, much less a 4 month old. Her parents lost their first daughter, Maddy, to undifferentiated sarcoma... please pray for them. We met the Escoes when our daughters went through some of their treatment together. Kendrie is doing great, but her dad, Blaine, is facing another relapse of his cancer. I know they all welcome any prayers and encouragement you can give them. Cancer is hard, but all of these families are facing/have faced it w/ 2 members of their immediate family. It's really just so unfair!

I hope to get some pics up from St. Patrick's Day soon. Would you believe (shame on me!) that I didn't get a single picture of Chip?!?!?!?!?!?! I know we have at least a couple from family member's cameras though. There were 5 kiddos 3 and under all celebrating together and we've got the pictures to prove it. I haven't seen them yet, but I've heard they're pretty funny. :) Izzy loved the parade and kept saying "more music, more music." It was a good and green day!

I'm gonna nuzzle this sweet baby boy for a few minutes more and then round up Tre' and Iz for some chow before we hit bathtime and bedtime. Hope all is well in your neck of the woods and that you have a great week!

The Blessing and Other Random Stuff

Izzy is almost always careful to make sure we say the blessing before we eat. She usually helps me say the blessing and it goes something like this (Izzy's words are in ALL CAPS): God is GREAT. God is GOOD. Let us THANKS for our FOOD. Sometimes we continue w/ the 2nd half of the prayer and sometimes we say, "Amen," there. Last night a very hungry Izzy was helping me say the blessing -- she could hardly wait to eat as you will see. Our blessing last night went something like this: God is GREAT. God is GOOD. Let us BITE?? thank him for our BITE???. She was starving and couldn't get through the prayer, just kept asking for a bite. :) I admit to giggling through the, "Amen," and I'm pretty sure that there were some giggles from God as well!

We went to the doctor today for well visits for both kiddos. Both checked out well. Iz is 1/2 an inch shy of 3 feet. Chip is growing like a weed as well and weighed in at an even 10 pounds and had grown 2 1/4 inches, so he's now 23 inches!!! I couldn't believe he had grown that much, but it's kind of funny b/c he's just now as long as Catie was when she was born! She was a LOOOOOONNNNGGGG baby! They both got shots and Iz had to get a finger stick. It was NOT a fun thing for her and she had the tears flowing pretty good. In fact she was so pitiful w/ the finger stick that Doctor Cossio went back and warned Mrs. Sharon (the nurse who gives the shots and who took such amazing care of Catie each week when we checked in there) that Izzy's visit to her was probably not going to be very pleasant. I'm so thankful for those tears though... b/c it means she's not accustomed to things that little kids shouldn't have to be accustomed to. Driving home I was thinking about how Catie got a finger stick pretty much every week of her life from the time she was 1 year old (unless she was inpatient or having her port flushed)... She was a champ at it and that made our life much easier. But I hate that she had to be so accustomed to it, and I pray our other kiddos never have to be.

All is well here. I've got a little less than a month before I head back to work for the last nine weeks of school Soaking it all up day by day.

A couple things before I sign off:

Please pray for Sophia's family as her battle with medulloblastoma recently ended when she joined Catie running through the field of Heaven. We know the ache that fills their hearts all too well and we pray for their peace and comfort. (Carepages - sophiasjourney)

Our friend Abby has her MRI tomorrow morning. She is off treatment for relapsed medullo and we're looking for nothing but good news for her. (Carepages - AbbySmith12)

I believe that I've mentioned our friends the Maxeys here before. We were in treatment w/ their daughter, Maddy early on w/ Catie. She fought a brave fight before winning her victory against cancer as she walked through the gates of Heaven. Kirk and Natalie (mom and dad) have a 2 year old son, Grant, and an infant daughter, Annette. Annette was recently diagnosed w/ ATRT and is toughing it out through some harsh treatment. Today, as a precaution, they are scanning Grant. Please pray that they get the all clear and that they are peaceful as they wait for the results... Pray for Annette and for her treatment to be more effective than they can dream and for them to get to see her grow up. I can't even begin to imagine the road that they're on. (www.maxeyweb.com)

Also continue praying for our friends the Morgans. Ryan is battling relapsed neuroblastoma and his mom, Missy is fighting relapsed breast cancer. (www.superryan.blogspot.com and www.caringbridge.org/visit/missymorgan)

Annette

When Catie was going through treatment, there seemed to be an abundance of baby girls within a year of her age waging their own battles on the 3rd floor of Scottish Rite. One little girl was Maddy and we got to know her family as we walked the halls together. Maddy battled undifferentiated sarcoma bravely, but won her battle as Catie later did, by running into the arms of Jesus. I remember watching her family walk the halls with her on their last stay and my heart breaking for them. They have since welcomed 2 more little ones to their family. Grant is 2 and Annette is just 10 weeks. This week Kirk and Natalie (mom and dad) learned the unimaginable news that Annette has a large tumor in her brain and a tumor in her spine. They are facing this beast a second time. Doctors are suspicious it's medulloblastoma or ATRT, but nothing will be known for sure until pathology reports are in. Her biopsy and debulking surgery is scheduled for early this morning. Please pray for this family... pray for a better outcome... pray for strength and wisdom... pray for Grant as his world has been turned upside down... You can visit them and leave encouragement for them on their blog... http://www.maxeyweb.com

Please Pray

Edited to add: Missy now has a caringbridge site. I know that she and her family would welcome your encouragement and prayers. Missy's Site


There are times in this life when there is nothing you can do but pray for someone. Our friend Ryan (also known as Super Ryan) was first diagnosed with neuroblastoma in 2004. He had some time off treatment and then relapsed. His mom, Missy was diagnosed with breast cancer not long after he relapsed. Missy battled and Ryan battled on. Ryan continues to battle his relapse and Missy has just learned that her cancer has returned. She has gone home on hospice... Please pray for this family... pray for their three children... for Les, dad and husband... Please just pray for them. SuperRyan

We're Still Here

Wow! What a busy week! Where to start?

Friday night we threw our Catie party at the home of good friends. We had a great turnout, and though the one we were celebrating wasn't with us, I think she would have approved. We decorated w/ table runners that had both frogs and butterflies and Gerber Daisies in Coke bottles (Catie loved to drink Coke out of a glass bottle).

We served all of her favorites... boiled peanuts, chicken nuggets from Chick-fil-A, olives, caramel popcorn, brownies... she wouldn't have known what to eat with all of her favorites out like that. We ate well and collected a good bit of stuff for the Ronald McDonald House here in Savannah.

It really was a great way to celebrate what would have been her 5th birthday.

We've also gotten several notes about other folks honoring Catie with donations and in kind donations to their local Ronald McDonald Houses. A little girl in Marietta, Clara, turned one on Sunday. Her parents asked for donations to the Atlanta Houses and ended up with a trunk full of stuff and $1000 dollars that they're donating in Catie's name!!! Kristin in Mobile and her family threw a Catie party complete with butterfly cupcakes. Another family from the Atlanta area placed flowers in their church in honor of Catie's birthday. And our dear friends the Hangers went shopping and took stuff to our Ronald McDonald House at Scottish Rite.

This pic is of Lisa and Anna (medulloblastoma survivor and hero of Anna's Angel Fund) and Cari (our favorite house manager and dear friend) when the took the stuff by the House.

So... our girl was celebrated! Thanks to all of you who sent notes and cards, who called and prayed. We made it through...

I was hoping to update you on the luncheon in Atlanta this weekend as well, but Ms. Iz just woke up, so I'll do that later. I'll end with a pic of her sleeping (as I had to take one to remind myself that she really does sleep on occasion). She's a great napper, just not at night!! =)


Ok, I know I'm totally breaking all kinds of rules in this picture! She's sleeping on her belly (can't make her stay on her back), she's in bed w/ a bottle and a blanket... oh well, I'm busted!! =)

One other thing before I close.... this is the hard part. We've just learned of two dear friends who have relapsed. Abby and Chayton... both are medullo patients. It's such a cruel disease and our hearts are breaking for their families. We know there are good options for them, but we hurt that their families are going to have to reenter the battle... one time should be enough. So please check on the at the links below... let them know you're praying for them.

Abby is on Care Pages. When you go to this link, click the tab that says Care Pages, then click visit. Enter AbbySmith12 as the page name and it should take you there.

Here is Chayton's link.

The Izster

Ok, some of my pics are doing funny things in this post. I've adjusted the size, but they're not changing for me. I'll fix them later.

It's funny how you can hit a week with a baby and all of a sudden they can do all of these new things that they couldn't do 10 days earlier. I'm telling you, I don't know where this child's energy comes from, but if I could bottle it, I wouldn't sell it, I'd keep it for myself! I'd be running circles around everybody (and shedding some pounds no doubt).

Izzy has FINALLY cut a tooth. I thought she had one come through several months ago, but it ended up being something called a pearl (I think that's right). Whatever the right name is, it definitely wasn't a tooth, because it was gone a few days later. She cut her first tooth on Tuesday this week. Three more are not far behind. She's handling it pretty well. Funny thing is, any fussiness or sleep problems have been blamed on teething for the last 4 months. Now that she's actually cutting teeth, she's really doing well. Still not a great sleeper, but we figure one day she'll get it down. She's started getting up on all fours and rocking. I see serious trouble in my future!! I've got to get cracking on making sure everything is babyproofed. We've never had one this young be mobile, so this will be a new experience (but a normal one, thank goodness!!). She's also started clapping and looks so proud when she does it. Last night she ate her first "full" meal at Cracker Barrel with no baby food. She especially liked the dumplings her daddy was eating and, like with her sister, biscuits are a hit!

This weekend, Mary Grace and her family came to hang out at the beach with us. We didn't get a lot of beach time in (think sand storm!!), but it was great to visit and catch up. Izzy LOVED all the attention and loved being with Grant and Mary Grace.
Here's proof.

Playing Peek A Boo?


Or attacking with her killer fingernails?


The three stooges


Izzy was really tired and we were trying to finish some stuff up around the house. Mary Grace sat down and started reading Brown Bear to her and Iz was quite content.

Yesterday was the 19th (funny how that happens every month, huh?). It's hard to believe it's been 8 months (and hard to believe it's ONLY been 8 months). There's a Catie update brewing, but it'll come later.

We do ask that you remember our sweet friend Summer's family. Summer joined Catie yesterday and while we know she is healthy and cancer free, we know how much her family is hurting. This disease is so unfair, no matter who it strikes, but especially when it steals a child away. Please let Summer's family know that you're praying for them. We had the privilege of being housmates with them at Lighthouse last summer. Summer was so sweet to Catie. One of the things I really remember is Summer letting Catie borrow her Gameboy. Catie thought she was HOT STUFF and a big kid.


This is a picture of Mary Grace, Catie, Summer (in the back), and Hannah (Summer's best friend who will miss her so). D.D., Mary Grace's mom, had just finished fixing all the girls' hair (it's a big deal when you've been bald as all 4 of them had) and they were looking gorgeous for the talent show. All four girls were healthy and doing well at Lighthouse at the end of July last year. Now two are gone. We've got to support research to find a cure.

Thanks for checking in. I'm off to get a couple of things done while Iz is finishing her nap!

A Note or Two

Thank you God for air-conditioning!!!!! Good gosh it's hot! The heat index here today is like 117-118. That is just insane. We're staying inside and doing as little as possible.

This is just a quick post... I've been meaning to put up some links to some of our friends who could really use some extra prayers, and I just haven't done it. So... here goes.

Super Ryan is one tough kid who is battling relapsed neuroblastoma. That, in itself, is more than enough for one family to handle, but they've just learned that his mom, Missy, has breast cancer.

Ben has recently relapsed with leukemia. His journey has already been long, so this is tough. He's just achieved his 2nd remission and will continue treatment for quite some time.

Summer has relapsed AML. She is starting another new chemo this week that will be very tough.

I know all of these families would welcome your encouragement and prayers. Your words really do go a long way in helping these families day to day.

That's all for now... I just wanted to get those links up. I'll update you on us later -- so long as we don't melt!!!!!