This is what I know…

December 12, 2014 by Jamie Cook

This is not our first rodeo…we’ve been in this boat before, and will be again. Many people ask if it gets easier. The answer? Yes and no. A fellow mom said something along the lines of, “The known is so much worse than the unknown.” When Callie Anne had her first skull surgery at 9 months old, it was hard. Likely, crazy hard, on all of us. We had seen post op pictures and talked to other families, but until you’ve lived it, you really don’t know what you’re getting into. This time, we know. We know too much. On one hand, it will probably be good in that we won’t be shocked at how awful the first 2 or 3 days post op will be. On the other hand, we KNOW how awful the first 2 or 3 days post op will be.

I’ve been working up a new blog post in my mind for a while, but things just kept happening; like CA getting the flu on Monday and me going into full blown meltdown mode at work. So, I kept thinking, “When things calm down and we have a better picture of what’s going on, I can write about it.” Well, that’s kind of a joke because things will never truly calm down. So…when thinking about this surgery coming up, this is what I know:

I know that in 5 days, we will hand our baby off for the 7th time to a surgeon. I know that we will sit in a waiting room and make idle chit chat for 5+ hours while skilled craniofacial and neurosurgeons cut our daughter’s head open. I know that her skull will be opened up, her skin pulled down to allow access to the forehead and nose. I know that her skull will be taken apart and put back together in a way that will add room for her precious brain to grow and develop properly.

I know, unfortunately, that I won’t be the nicest person to be around that day. In the face of severe stress, I struggle to hold my composure. I lash out at my loved ones and tend to be easily irritated. Each time, I try to do better. I know I will try again next week.

I know that there are risks. Countless risks to this surgery. And I know that David and I  have a level of faith that allows us not to dwell on the risks, but to trust the capable hands of her surgeons. After all, “Worrying does not empty tomorrow of its troubles. It empties today of its strength. ” – Corrie ten Boom

I know that we will be reunited with Callie Anne in the PICU Tuesday evening and she will look extremely different that when we handed her off to nurse Cindy. And I know that will be hard to swallow, but it will be ok.

I know that on day 2 post op, her eyes will be swollen shut. She will be in pain, scared, and pretty ticked off. Last time, on this day, I sat in a ball and cried while my mom and husband took care of her. This time, I will do better. I have to.

I know that the swelling will take weeks to completely go down and it won’t be until then that we will know how our sweet girl’s appearance will be affected by this necessary surgery. I know that it will be hard, just as all the others have been, to see her change so drastically.

I know that my family will be there to help every step of the way. I know that my husband will, once again, turn into the rock on which I will lean. He will go into his super daddy mode and make me fall in love with him all over again. I know that my mom, who is simply an extension of myself in these times, will seamlessly step in when I need her.

I know that David and my parents will halfheartedly attempt to get me to leave the hospital and get some rest. They try it every time. It never works and they are starting to just let me be my stubborn self.  I know that I will not leave my baby’s side. It will be long, sleepless nights for both of us, but I know that when her eyes open, I will be the first person she sees.

I know that we will not have the burden of the expense of travel costs or booking fees on this trip because our amazing friends and family have held fundraisers and made donations that will allow us to do what we need to do. When the bills start coming in, we will be ok.

As if all this wasn’t enough, here are a few more things I know:

While there are risks, Callie Anne will be wrapped in the grace of God and I trust that she will be just fine.

While we will be emotionally and physically exhausted, somehow we will find the strength we need to be there for CA. We always do.

While the week after surgery will be more miserable than I can ever put into words, it will only be a week and will soon be just a memory.

While Callie Anne will be more aware of what is happening this time than ever before, she also has favorite things now that will serve as comfort. (even though we may want to throw Mickey Mouse out the window by next weekend)

While only our parents (CA’s grandparents) will be with us in Dallas, we know we will have thousands of supporters around the world praying for our baby girl and watching for updates.

While I’m already exhausted from spending weeks getting the financial pieces in place for this surgery (and let me tell you insurance is getting harder and harder to deal with), from this week of dealing with CA being sick and not even knowing if she would be able to have the surgery, and from the emotional toll of preparing myself for another big physical change…I know that we will get through this.

While it is all scary and stressful for us and extremely painful for her, after this surgery Callie Anne’s brain will have more room to grow and she will continue to amaze us with her development and successes!

Surgery is scheduled for 1:00pm on Tuesday. I will update the Facebook group, Prayers for Callie Anne, throughout the day.

 

 

Life is Good!

September 5, 2014 by Jamie Cook

We have been unbelievably  blessed that Callie Anne has been so healthy over the last few months. Yes, she had pneumonia and two stomach bugs, but that’s just “toddler stuff” not “Apert stuff”! There are so many things that can “go wrong” with kids with this syndrome, but she has truly had it pretty easy so far. Even with 6 surgeries in her first year of life, she’s still doing great. After that first year of constant crises, surgeries, and very scary days, things are calm for now. Here’s an update on where we stand.

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PRESCHOOL!

She started the toddler preschool program at the Sunshine School and Development Center in August. She absolutely loves it and so do we! The passion and dedication they have there shows in every way. All of a sudden, she went from being a baby to being a full blown toddler! Her daily report sheets always say that she’s “vocal”, “active”, “energetic”, and “happy”. She’s charming everyone in the building and I even had to talk to them about not letting her con them into not doing the work she needs to do! Sometimes she’s so cute and charming that it’s hard to tell her “no” or make her do things she can do, but doesn’t want to do. :)

NO SURGERY ANYTIME SOON!

That’s right…Callie Anne will not be having any surgeries in the near future. She recently had a neuro and opthamology check up which both showed no problems at all! It’s very common for kids with Apert Syndrome to have eye problems and require glasses and, in most cases, surgeries to correct eye muscle problems. As of now, she isn’t showing any signs of problems in those areas. She also is showing NO signs of intracranial pressure that would indicate it’s time for another cranial vault remodel surgery. We’ve talked with her surgeon, Dr. Fearon, and based on all her exams and her amazing development, he sees no reason to do another skull surgery. This came as a surprise to us as we had expected her to need one this past summer, then when that wasn’t needed we thought for sure it would be this fall. Getting the news that is STILL isn’t needed was music to our ears!! He wants to see her in Dallas in March and we will reassess at that time. She just continues to defy the odds and prove us all wrong.

WE HAVE A WALKER!

In another feat that has amazed us beyond belief, Callie Anne is now walking all over the place! We were prepared for her not to walk until possibly age 3 or later. But, this girl has blown away every milestone so far, even if it was a little later than others. She is so independent and curious that she can’t  be held back! Getting the AFOs (orthotics) was such a gift and has given her the stability in her ankles to balance. She loves wearing them because they give her the confidence she needs to walk comfortably. It’s so fun to see her toddling all over the place!

TIME TO EAT!

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When CA was 6 months old, she had a Mic-Key button (or feeding tube) surgically placed so she could get the nutrition she needed. She had very low tone in her facial muscles which kept her from being able to manipulate foods and liquids to swallow. She also has a cleft palate that kept her from being able to create suction to drink from a bottle. In addition to all of that, she aspirated everything she swallowed, including saliva.

Last March, after a swallow study at ACH, she was given the “all clear” to start feeding her pureed foods. It was so exciting and she loved it! It didn’t take long before she was even drinking from a sippy cup. She still received tube feedings, but was enjoying tasting the pureed foods.

As she’s grown so much lately, we thought we would try some finger foods last weekend. Well, it was a HIT! She is eating EVERYTHING and having absolutely NO problems! I plan to talk to her nutritionist next week and see if we are close to not needing to tube feed formula anymore because she’s really getting typical toddler nutrition now.

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She even had her first restaurant kid’s meal tonight! For most toddlers, this is a fun experience, but isn’t a huge milestone. For Callie Anne, it’s HUGE! For almost 2 years now, she’s sat and watched us eat at every single meal. We would tube feed her at the table in restaurants or at our dinner table. She has been able to eat Puffs because they dissolve in her mouth, but until the last few months, she didn’t have any teeth. We’ve had to feed her the purees in between our own bites. Now, I know this is typical for young kids, but most parents don’t have to do it for 2 years. Since this weekend, we’ve been enjoying our meals while she sits with us and enjoys hers. It’s a whole new experience for our family, and to be honest, a pretty emotional one for this mama. Tonight, being able to order from the kid’s meal for the very first time was a moment that brought David and me both to tears. We truly feel like a “typical” family for the moment.

We know that with Apert Syndrome, things can change at any minute. Literally. And we watch it happen to our Apert family all the time. Every time we see or hear about one of our Apert friends having medical problems, we feel a lump in our throats. While we are enjoying being a somewhat “typical” little family right now, we are also realists and know that we cannot take one minute for granted. We appreciate every single day of health and every single milestone Callie Anne hits so much because they are sometimes hard to come by. We think every day about our friends with Apert Syndrome who aren’t in a “healthy streak” like we are.

For now, we are just reveling in God’s grace and loving watching her grow and learn.

Am I “That Mom”??

June 24, 2014 by Jamie Cook

This summer I’ve done three interviews for college students in education classes who needed to interview the parent of a child with special needs. It’s been nice to reflect back to the beginning and think about how far we’ve come since Callie Anne was born. The most recent one had several questions about special education and care. Some of the questions were about how well those we’ve worked with have served our needs and communicated with us. Another asked what I would like for caretakers or teachers to know. I loved this question and put a lot of thought into my answer. What I finally came up with was hard to put into words. My overall feelings about this, as both a teacher and a parent of a special needs child, are that I would love for those I seek services from for my daughter to realize where my heart is. Parents of special needs children are used to getting a LOT of information about their child. From day one there have been extensive tests, reports, evaluations, and scans that tell us more about our child than a typical parent needs to know. In my case, I spent the first year of my daughter’s life living and breathing for her. I spent every waking, and sleeping, moment with her and was involved in every single move she made. People have different opinions about whether this is healthy or not, but unless you’ve been in my shoes, you don’t get to voice your opinion on this. We did what we knew to do and wouldn’t change a second of it.

After spending a very intense year at home with my child filled with therapies and surgeries, I had to go back to work and leave her in the hands of strangers. This was the hardest thing I’ve ever done and relinquishing that control was, and still is, painful. All of the sudden I wasn’t sitting in on every single therapy session and learning ways to help her reach her full potential. I’m a hands-on mommy and need to know that I’m doing all I can to help her overcome the obstacles she faces. It was a rocky road, but we’ve both survived and she’s making nice progress in all of her therapies. Even without my constant watchful eye! :)

When she started at the developmental daycare, I inquired about orthotics and if the therapists there thought she might need them. I’d seen some other children with Apert Syndrome with them to help give stability for walking. I am not a therapist and I usually have no idea what I’m talking about. All I know to do is research on my own and ask questions. Apparently, they thought she did need them and she was fitted by an outside company who comes to the clinic to see the kids. This took my husband and me out of the equation. We weren’t there for the fitting. We weren’t there to talk to the company about what they were fitting her for. We have yet to speak to anyone who can fully explain the braces to us. We don’t know exactly what they will do for her. We don’t have the information we need to pass on to her surgeon so he knows what is being done in therapy. Today I was told she would be getting them on Wednesday. When I asked when we would have a time set up to show David and me how they should be worn, to talk to us about them, to discuss the desired outcomes, I was looked at like I was nuts. I cannot be the only parent who has ever asked for this type of communication!?!?! I will not apologize for not believing it is acceptable for my 1 year old to just come home from school one day with braces on her legs with no explanation or discussion. I’m having a hard time wrapping my brain around the fact that my inquires seem so foreign to everyone involved. These don’t seem like irrational requests to me. I have the right AND responsibility to know every miniscule detail of my child’s care. PERIOD. No dirty looks, no sarcastic comments, no exasperated responses are necessary. She’s my child and it’s my expectation that I be involved in her plan of care. In my mind, there is no other option.

We are not the kind of parents who send our child to daycare so she’s out of our hair for 7 hours and so we don’t have to deal with her therapies. I want to be involved. Clearly what I expect is more than is acceptable in this arena, but I’m not willing to back down. I will continue to fight to be an integral part of my child’s development and I will not accept less than that. I do, however, wish that my requests were met with cooperation and a desire to do what is best for my child and not confusion at my interest. But, Rome wasn’t built in a day and I will find a way to navigate this world. I will find a balance between my high expectations and the “system”. I’m trying so hard not to be “that mom”, but the truth is, I don’t know how to be anything else. I wasn’t given a handbook when she was born. I don’t have all, or any, of the answers. I know I need to lighten up in some areas, but there are some where I just have to draw the line. I’m consciously working on knowing the difference. I have a feeling this is going to be a LONG ride, but it’s a ride I can’t  and won’t get off.

So, when I’m asked what I wish I could tell special education teachers or caretakers, my answer is this:

1. Parents of children with special needs have special needs themselves. We (or I) need communication. I need to know more about what my child is doing at school than I would if she didn’t have special needs.

2. We didn’t go to school to learn how to be parents of a special needs child. We didn’t study the laws, protocols, and guidelines. You can’t assume we know anything. You do this for a living. We are learning as we go.

3. When we seem exhausted, frustrated, and short tempered, it’s because… we ARE. We have to push extra hard, research for hours on end, and are often met with less than friendly interactions with those who are in a position to help us if we only knew what to ask for.

4. You may do the same therapies, lessons, and paperwork for dozens of kiddos and it becomes rote to you, but we only have 1. We have 1 child to advocate for, to push for, to love. Please forgive us when we get frustrated when we feel you see our child as just another client.

5. Even when we sound like we have it all together, like we know what we’re talking about, like we’ve been there a done that…we are still just scared and worried parents trying to do the best we can with what we have. In the best of situations, we are on the same team working for a common goal. In the worst of situations, we are separate and those of us on the outside feel alone and abandoned.

So….that’s my soapbox for today. I don’t often talk about the negative side of this life we’ve been given. Even on my most frustrating days, I’m honored to have been given the opportunity to be Callie Anne’s mommy and to be living this amazing life. I have to believe that one of the reasons she was put in my arms is because I will fight for her. I will make sure she has every opportunity for success.

 

Milestones, Manners, and Much More

May 14, 2014 by Jamie Cook

I haven’t written in such a long time. The last time I blogged was before my sister-in-law passed away, and to be completely honest, I’ve had a hard time finding a way to put a positive spin on some of the events in our lives over the past few months. I’ve sat down to write about all the wonderful things happening with Callie Anne a few times, but my mind always goes back to the last time I wrote and it was all about Leslie. Even though I am very familiar with the grieving process and several healthy ways to go about dealing with the death of a loved one, I’m pretty much just ignoring all of that. There aren’t many words to explain it, but I’ve basically made a conscious decision not to deal with my grief, anger, or confusion about losing my sister-in-law and unborn niece to the freaking flu. At some point, I’m sure I’ll start dealing with it, but for now…I simply can’t and won’t.

So, with all that depressing stuff out of the way, I really do want to write about the fantastic things happening with our sweet Callie Anne! This girl is tackling every single obstacle in her way. When she was born and we began to learn more about the range of delays associated with Apert Syndrome, we really weren’t sure what to expect. We knew that she would be ok and we would be ok no matter what her delays turned out to be. At the same time, we made the decision to give her every possible advantage within our ability to allow her to be as successful as she could be. Our take on it is to basically expect her to do just about everything until she can’t. Then we deal with what she can’t do and find ways to help her do them or help her adjust. In the past few months, she’s showing us that there aren’t many things she can’t do, so we just don’t need to worry our pretty little heads about it. We believe her successes to date have been a combination of her strong willed personality (and there are SO many other vivid words to describe it)  and our determination to give her the best odds possible.

So, here’s a recap of the milestones she’s reached recently.

After her last swallow study, we were given the ”OK” to start feeding her more by mouth. We puree food for her and she eats just about anything. It only took a few tastes for her to learn that she LOVES to eat! She eats 3 meals a day in addition to her tube feedings. We started with yogurt and pudding just to see how she handled the oral motor part of eating. Clearly, she handled it just fine!

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She is even drinking some of her formula and then taking the rest by tube. In the picture below she’s drinking water from a sippy cup. Before we started this, she hadn’t had anything to drink since she stopped being able to take a bottle at 6 months old and had the Mic-Key button put in. It was so much more emotional to see her drinking than I ever could have imagined! Just this week we started trying to wean her off the overnight tube feedings. We are on a 2 week trial and she’s only hooked up to the feeding pump for 5 hours instead of 9. We will reassess at the end of two weeks, and hopefully by the end of the summer, she will not have to be on a continuous feed at all overnight! We can’t wait for that part to be over!!!066

Now that we know it’s safe for her to eat, we aren’t holding back. And neither is she!! She will crawl into the kitchen and point at her high chair when she’s hungry. Here she is eating a full plate of chicken, avocado, and apples. This milestone is a tricky one. When your child can’t eat, can’t drink, and has to be fed by feeding tube as an infant, you have to turn that part of your brain off…indefinitely. When I was reading about being a new mother, I skipped all the feeding parts. I never learned about what to feed, when to feed, or how to feed your child. It was too painful both for CA and for me to not be able to take part in one of the most simple parts of infancy. So, now that have jumped in feet first, it’s a little intimidating. A 17 month old is much less patient with a learning parent than a 5 month old when learning to eat. And, honestly, this child in particular is less patient than most children. She knows what she wants and when she wants it. (I have NO idea where she gets that!!!)

129Now, for the manners part… As I’ve mentioned, and if you’ve met her, you KNOW….Callie Anne is a spitfire! This chick has so much personality and is super feisty! We are learning to become creative with ways to tell her, “NO,” because it’s the most said word in our household. Recently, I swatted her hand because she was going after something she shouldn’t touch and she immediately stared me down and swatted my hand right back. It was her first time acting out and caught me by complete surprise! We are now working on not hitting or “talking back”. It’s going to be a long road! :)

Again, when we were learning to be new parents, there wasn’t any need to baby proof our house at the time all the books and websites said to start baby proofing because Callie Anne wasn’t mobile for a while. Well, that changed very, very quickly! She is everywhere and is always one step ahead of us. I can’t even count how many nights I laid awake wondering when or if she would ever crawl or walk. Why? Why did I even waste the energy it took to worry? Hindsight is 20/20, though, right?

Callie Anne is cruising all over the place. She pulls up on anything that will hold still and, as long as she has something to keep her steady, she will walk all over the place. She uses this little walk behind toy to get all over the house, when she’s not crawling at warp speed, that is.

130But, here’s the problem:

126Those ankles! It stresses me out to watch her stand or walk on them, but this is just how her ankles and feet are made. In true Apert form, she has already learned to take what she has an adapt. It may not look graceful, but she gets where she needs to go. It’s not a problem for her; only for us. So, we will get over it! Today she was fitted for DAFOs (Dynamic Ankle Foot Orthotics) that she will wear with shoes. We expect them to give her more stability and, in turn, give her the confidence to walk without holding on to anything. She will be running in no time. :)

As you can see, if you’ve been following this blog for long, Callie Anne is doing unbelievably well! We are enjoying every moment of it. We know that hers/ours is a long journey full of ups and downs. With something like Apert Syndrome, which affects so many parts of the body, things can change at any time. We will never take one milestone or accomplishment for granted. We hope these wonderful moments will help us get through the difficult ones to come.

Looking Ahead:

We are looking forward to a medically uneventful summer! Callie Anne will have another optic nerve exam by her ophthalmologist in August. The results, as well as measurements and pictures of her head, will be sent to Dr. Fearon and he will decide when she will need the next cranial vault reconstruction. We expect it to be done in the fall. It would be great if it would wait until Christmas break, but we will do whatever needs to be done to protect her brain and allow her to continue to grow and develop like a champ!

Only the Heart Knows

February 9, 2014 by Jamie Cook

If you have been following my blog for long, you know that this is one of my favorite sayings.

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Life has handed David and me a tough hand in the last few years, but we’ve learned so much that it is all worth it. I’ve always read this quote thought of our battles. First, having a scary pregnancy and thinking our baby would not live. Then meeting our sweet Callie Anne and learning that she has Apert Syndrome. Next we faced surgery after surgery with dozens more to come. These are our battles. Well, these and all the other things that come with them. The pain and stress that our hearts carry is not always visible and it has taught us to keep this quote in mind when encountering others.

On January 11, we began a new battle. My brother’s wife was hospitalized with h1n1, double pneumonia, and later ARDS. She lost her baby at 21 weeks while in a coma, which she remains in today. I’m sure you’ve been following her story if you’re reading this blog. If not, go to the Facebook group “Love for Leslie.”

The thing about these personal battles is that life still happens outside of what’s going on in your hearts and minds. We still have to go to work. We still have to run errands and run a household. We still have a daughter to raise and care for. And even more than that, when we are out living our lives, we encounter people who have no idea what is happening in our hearts and don’t know to cut us a little slack when we are short with them or grouchy.

Today, after getting some not so great new regarding the progression of Leslie’s condition, I had to go run errands. While I was waiting for a very long time in line at the pharmacy to pick up Callie Anne’s medications, I found myself so frustrated that they were wasting my time and that I was the 4th car in line. When I got to the window, the lady was less than friendly. By the time I left I was aggravated and annoyed. Then I went to the marketing day for Rhea Lana so I could get fliers to pass out in return for an early shopping pass. (Callie Anne’s cute clothes don’t come cheap!) As I stood in line with dozens of other moms, I found myself looking around and wondering, “Does it show?” Does the pain in my heart show on my face? Is there any way these people know what I’m fighting inside?

The answer is no, of course. Well, with the exception of the smeared makeup and very tired eyes from the drive down there. But, the point is, they don’t know what I’m dealing with and I don’t know what they are dealing with. So, when I get annoyed at the long line of cars who are all picking up medications, the mom on the phone in front of me not paying attention, the kids running around like wild monkeys, or the lady that was not so friendly in answering my questions, I have to wonder…are they fighting a battle like I am? Do they deserve to be cut a little slack like I want them to cut me?

I’ve found myself wondering the same thing while sitting for hours and hours in the ICU waiting rooms during Callie Anne’s hospital stays and now Leslie’s. Those rooms are full of people hurting. When you are there, you know that everyone else there is fighting a similar battle to yours. You’re all worried, scared, and exhausted. . Hospitals are like an alternate reality. They are their own little communities and everything is different inside those walls.

But, it’s not that easy when you’re out in the real world. You have to dig deep to remember that everyone you meet deserves the same love you want extended to you. Now, does that mean you’ll never hear me say, “What the h-e-double hockey sticks is her problem???” Now way! But, hopefully, more often than not, I’ll step back and remind myself that I have no idea what is on her heart or mind.

There are so many things I hope we all learn from both our experiences with Callie Anne and now with Leslie. One of them, is to stop and look around every once in a while and ask yourself what the people in the room with you might be battling, and if you’re so inclined, just stop and say a quick prayer for them. You never know who you could be blessing.

 

10 Fingers & 10 Toes!!!!

January 9, 2014 by Jamie Cook

Most parents love the moment when their babies are born and they get to count all 10 fingers and toes. They have picture frames and cute little things that say 10 fingers and toes all over them and kids’ books that talk about them all the time…trust me, I know. Several unknowing people gave us these gifts before CA was born. They didn’t mean anything hurtful and didn’t know that she wouldn’t have them at birth. I quickly threw them away and haven’t thought of them since.Tonight, for the very first time, I got to count my daughter’s 10 fingers and 10 toes! It has been a long are difficult road for all of us, but we made it and have these beautiful digits to show for all the pain she endured and stress we went through. Her life will be so much easier now and she will be able to do so much more. Not the least of which is wear rings :)

These photos are graphic and raw. As they heal, they will look so much better, but I know there are so many people dying for a peek!

We unravel the casts ourselves and under them is gauze and wrappings to keep them covered as they heal during the 3 weeks of casting.

Taking off the casts!!

Taking off the casts!

After unraveling the casting, we soak her in the tub to loosen the dried bandages. We have to be super careful not to pull the gauze and hurt her skin grafts.

Soaking off the gauze

Soaking off the gauze

She was playing with toys immediately and licking each finger in wonder!

I can do so much with these things!

I can do so much with these things!!

Here are all the new digits and comparisons from beginning to end.

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It’s truly amazing and hasn’t completely set in our brains. We can’t wait to watch her grow and learn using her new hands and feet!

 

 

2013: A Year of Learning and Growing

January 2, 2014 by Jamie Cook

As I reflect on 2013, I remember a particular day last January during one of Callie Anne’s 5 hospital stays of the year.  We had spent last New Year’s at Mercy Hospital. David had to go to work, so my amazing friend, Jodie, came by every morning during her Christmas break to bring me breakfast and so I could take a shower. On this day, when she walked in, I was sitting on the couch in the hospital room holding my 4 week old baby girl with my computer on my lap and crying my eyes out. Not just a few tears streaming down; it was like the ugly cry. It wasn’t until this hospital stay that I had began researching Apert Syndrome and connecting with other families. Until then, we were just trying to survive and really had no idea what we were dealing with or what was in our/her future. After finding the Apert family support groups on Facebook, I came across someone who is a dear friend now. I had spent most of the previous night reading through Kerry Lynch’s blog about her daughter, Mary Cate. It was that morning that I realized what 2013 was going to be like for our family. While it was comforting to know that this family had made it through, so we could, too…it was beyond overwhelming and, frankly, scary as hell! Here is our little family exactly one year ago.

NYE 2013

NYE 2013

Little did we know, this was the beginning of what would (hopefully) be the hardest year of our lives. However, it was also the most rewarding in so many ways! David and I are much better people today than we were just 1 short year ago. We are more faithful, more kind, more giving, and so much more patient. We may not have been handed the easiest life, but there is no doubt in either of our minds…we were absolutely handed a life that is better than we could have ever imagined! Here are just a few of the things I learned in 2013.

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I would not say I was an unkind person prior to 2013, by any means. However, I know for a fact that I’m much more kind today than I’ve ever been in my life. One of the zillions of gifts God gave me when He gave me Callie Anne is a heart that sees something special in people that I may not have taken the time to see before. I find myself thinking before I speak or judge much more than ever before. When I see someone who is different than me in some way, I almost always take a moment to imagine their story. Every single person is the most important person in someone’s life. They have so much more to offer than is ever apparent at first glance and deserve the opportunity to let that show. Can you imagine a world where everyone took a minute to think, “What is the most kind way to say this?” before they spoke?

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I’ve always been a Christian, but I’ve not always been one who prayed regularly. I just didn’t take the time to do it. Since CA came into my life, prayer has become part of who I am. There have been so many times that I didn’t know how to pray. My heart hurt too badly or I was too scared, too confused, too overwhelmed. In those times, I find myself just “being” with God. I don’t always have to have a “sermon worthy” prayer to pray. Sometimes, I just say, “Be with me.” My heart and soul have changed so much in the past year and prayer has been a large part of that.

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I can only assume that all moms feel this way about their daughters, but I am just head over heels in love with this girl! I’ve never known anyone, especially someone so young, who is as strong as my Callie Anne. She already, at the age of 0ne, has a sense of wisdom in her eyes. She has been through so much more than any baby should have to go through, and yet, she always perseveres. She never has the “poor pitiful me” attitude. She just stops, regroups, and keeps going with whatever she has available to her at the moment. We could all learn a lot from Callie Anne Cook! I can’t wait to see what else she has to teach me!

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I’ve always loved this quote from Maya Angelou, but it means so much more to me today. We’ve met more doctors and nurses in the past year and a half than in the total of both of our lives prior. One thing we have learned is that being a doctor or nurse is a true calling. The ones who make you feel good, safe, comfortable, are the ones we love to remember. And the ones who were less than friendly, didn’t respect our roles as parents, or let their egos get in the way are the ones we will always remember, but for other reasons. I don’t remember the names of every nurse who has taken care of Callie Anne so far, but I can picture them in my mind, remember specific things they said or did, and absolutely remember how they made me feel. In each of her surgery photo books, I include pictures and names of nurses who were part of our journey.  Being in the hospital with a child is never easy and nurses are the ones who can make it or break it. Luckily, most of ours have been more than wonderful!

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My mom and I have always been close (well, except for those teenage years…). She’s the strongest and smartest woman I know. But, it wasn’t until I became a mother that I truly understood the connection between a mother and a daughter. When I got pregnant, I knew my mom would be a huge part of my life as a mother, but I never knew how much I would need her. More than how much I need her is how  much she is willing to give. I never have to wonder if she will be there for me, she’s just always there. It’s like my pain is her pain, my struggle is her struggle, and my joy is her joy. I guess it’s always been that way, but now I can see it and appreciate it. If I can be half the mother to CA that she was and is to me, I’ll be happy!

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David and I were married in September 2011, and pregnant with Callie Anne 6 months later, as planned. We were ready to be parents. What we didn’t take into account was that we probably could have used a little more time to experience life as a couple, but we are still extremely happy with how it all turned out. The first few years of marriage are hard no matter what! Add a baby to the mix and it’s even harder. Add a baby with special needs and you’ve really got the odds stacked against you. It’s very difficult not to take your fear, exhaustion, heartache, worries, and frustrations out on each other. We’ve learned that the hard way, but we’re making it because at the center of our marriage is always our faith. When the days are really tough, we try to turn to God because we both believe with all our hearts that He meant for us to be together, so He will help us through no matter what. We have learned a lot in the past year about how the other handles scary and stressful situations. And it is in those times that I fall even deeper in love with my husband because I see the strength he brings to our family as a husband and father. We spent this New Year’s Eve alone together recharging for 2014 and our goal for this year is not to take each other for granted and remember to nourish our marriage as much as we nourish our daughter. It’s not easy to take time to just BE together when your life revolves around your child’s medical needs, but in 2013, we learned how important it is.

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Not all of our days in 2013 were enjoyable. We had scary days. We had painful days. We have days full of heartbreak and days full of worry. But, we also had days full of joy, success, and pure love. It was those days that made the others worth it. One of the big lessons I learned this year was to be grateful for every single day you are given. Recently, we spent 4 days in the intensive care unit in Dallas with Callie Anne and a couple of those days were just downright terrifying as a mother. It wasn’t our first time in ICU and it won’t be our last. That’s just the way it is. But, in the end, I thank God for those days. I have more friends than I can count on both hands who would give anything to be spending the day with their child in ICU because that would mean their child is here on earth with them. Let us not forget that there is always someone who is hurting more deeply than we are. That certainly doesn’t mean that we don’t deserve to feel the emotions that come with those bad days. I’m the first one to close the door and have my own little pity party. But, when I’m done, I try to think of those dear friends who can’t hold their child and have to wipe their own tears that have fallen from the top of their child’s head, and I always try to stop and say a prayer for them. We are all fighting our own battles and I’m grateful to be here and to have my family to fight them by my side.

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Before we found out there was something “different” during my pregnancy, I was halfway through graduate school and teaching full time. I’ve always been the kind of person that tries my hardest and goes the extra mile. I never slowed down and always had a much too full plate in life.  I took a break from graduate school, knowing the rest of the pregnancy would be tough. It was October 2012, when I was 32 weeks pregnant and my doctor told me I couldn’t go back to work. My blood pressure was much too high to be on my feet teaching 4th grade all day. I fought her tooth and nail and even negotiated half days for about a week when it was still too much.(I wish I knew then what I know now…work is just work and can wait) I spent the last 6 weeks of my pregnancy either in bed, on the couch, or laid back in the recliner. My life changed that October in so many ways. I planned to return to work 8 weeks after Callie Anne was born, but that didn’t happen either. I haven’t been back to work since Oct. 2012. On Monday, I will be returning to the classroom to teach 2nd grade. I have so many mixed emotions about it. On one hand, I’m so ready to have a life outside my house and something else to obsess about. I’m also craving adult interaction and need a distraction. But, on the other hand, I can’t imagine not cuddling with my baby girl every morning and being right there for every new thing she does or says. (I’m sure some will be glad for that because I won’t be filling their Facebook feeds with pictures of every move she makes! :) ) I will always cherish the 13 months I’ve spent being at home with her, but I know it’s time to get back to work and for her to go to daycare and have more social interaction. 2013 was a unique kind of year for our family and one that will never be repeated. The coming year will be different in every way. But, it will be in every way that we all need. God knows what He’s doing and has shown it in every single minute of our lives since CA was born. We know He will continue to lead us into 2014!

So, as I think back to that morning in January of 2013 when I cried and cried over the thought of all we would have to go through during the coming year, I realize that we made it! And not only did we make it, but it’s been the most rewarding year of our lives! Thank you for being part of it!

Why Share So Much?

December 16, 2013 by Jamie Cook

There have definitely been mixed reactions to how we (I) have chosen to share this journey so publicly. Not everyone believes it’s a good idea or is interested in following the journey. I totally get that and have learned to ignore the not-so-supportive comments because there have been SO many positive reactions. I have so many reasons for sharing my blog, pictures, and status updates and I’ve been thinking about them a lot more lately as I’m preparing to go back to work outside the home and will be forced to prioritize.

The biggest reason I love sharing our story and why I started in the first place is because it helps me feel connected to others. Yes, we have an amazing support system from all over the world. However, the day to day stuff can be very isolating and lonely. While so many people offer their support in a variety of ways, David and I are still very alone in this journey when it comes to the daily activities. I find myself logging on to Facebook several times a day and almost always have an encouraging message or comment from a friend or even a stranger. Late at night, I go back and reread posts, messages, and emails from people offering support and it is so very comforting. The words of encouragement give me the little boost I need to stay focused when the load seems too heavy to carry.

In addition to needing the support and loving the encouragement, we have already gotten connected to so many families with children with Apert Syndrome or similar conditions through Facebook and this blog. I’ve been able to talk personally with 2 families in Canada who knew they were having a child with Apert Syndrome during pregnancy and share our experiences with them. Oh how I wish we had had someone to talk to before Callie Anne was born and we could have been prepared with medical information and emotional support. There are already a handful of moms who call, text, or email me when they have questions about medical care, development, or just need some encouragement. I love being a resource for them just as I have a handful of moms whom I call when I need the same things. We are a tight knit community, but you have to be accessible in order for it to work. This blog and Facebook allow that accessibility and I am thankful for it everyday.

By sharing our journey, we have opened the door to so many new and renewed relationships. David and I feel so blessed to have met dozens of new friends since CA was born. We have also had the pleasure of renewing and nourishing relationships with our family and old friends. When people have to pull together, it brings you so much closer and it’s been wonderful for us and our extended family. We have had many old friends reach out and offer support. When I find myself feeling weak and asking “why?”, it’s comforting to think about the way so many relationships have changed because of Callie Anne and I can’t help but think it’s part of her purpose. She’s changed the lives of so many and made our lives fuller by bringing people into it.

One of my favorite things about sharing pictures and updates is the awareness it gives to not only Apert Syndrome, but anything that makes a child different. The more people know about her and see the physical differences, the less surprised they will be when they see her in person. I’ve found that when we meet someone, especially children, for the first time and they have been following her journey online, they don’t seem shocked and almost never say anything hurtful. They are interested, but accepting. The more we talk about the differences, the less they seem different. I know for a fact that there have been dozens of conversations at dinner tables about how to react when you see someone who looks or behaves differently because of Callie Anne. By sharing her story, we are opening the flood gates and forcing those conversations to happen. I truly believe that it’s up to this generation to change how we see children and adults with differences. If we talk about it and teach the right values, we can do away with so much pain.

Those who don’t believe I should share so much don’t see the emails and messages I get almost every single day telling me how their lives have been changed in some way with help from Callie Anne or us. I’ve heard many times that watching our journey and faith has helped someone else in their walk with God. I’ve heard from mothers how they’ve been inspired to appreciate all the little things and not “sweat the small stuff” after reading about something we’ve gone through with Callie Anne. I’ve been told that seeing David and I go through so much and stick together even when it is really, really tough has been good for their marriages. And after every picture I post of CA, someone calls, texts, comments, or messages me letting me know how her sweet smile made their day. How can I not share when it clearly means so much to so many people?

Life is hard. It just is. So, if something like a picture of a little girl who’s been through so much in her short little life can brighten someone’s day, then why not? So even though I’ll be going back to work and won’t have nearly as much free time, I will not stop sharing or blogging. People are invested in Callie Anne’s life and she will need that support for a very long time.

 

Callie Anne’s First Birthday!

December 1, 2013 by Jamie Cook

Callie Anne’s first year of life hasn’t been the “norm”, to say the least. But what is a “normal” first year, anyway? We all have our own struggles, which to others may look insignificant, but they are all relative to our personal situations. Yes, we have had more than our share of struggles, but this little girl brings us more joy in a single day than we could ever ask for and it more than makes up for the tough times. There has been very little in my control since she was born, but the one thing I can control is my impeccable medical records. I’ve spent some time this past week looking back at our journey so far and realized that this girl has got quite a set of stats started already…

 42: the number of doctor appointments CA went to in her 1st year of life

26: the number of nights she spent in the hospital before the age of 1

14: the number of people who follow her case regularly, including: : pediatrician, developmental physician, craniofacial surgeon, neurosurgeon, neurologist, ENT, pulmonologist, audiologist, dietician, geneticist, developmental therapist, occupational therapist, physical therapist, speech and language pathologist

5: the number of trips we’ve taken to Little Rock for medical appointments since she was born

4: the number of trips we’ve taken to Dallas for medical appointments

4: the number of surgeries Callie Anne had before she was a year old

3: the number of sleep studies she had to endure this year

2: the number of swallow studies she has had so far

1: the number of MRIs she had in her first year

Needless to say, it’s been a very busy year for all of us! Looking back on all that we’ve been through made today even sweeter and more fun to celebrate. We made it! There was a time before she was born when I honestly wasn’t sure I would ever see her turn a year old and here we are! We are blessed beyond our wildest dreams! We began our day with lunch out with grandma Sherry where Callie Anne tasted some birthday brownie (and showed off her incredibly ladylike personality)!

Birthday Lunch

Birthday Lunch

Then we headed over to Camma & Poppy’s to set up for the big celebration!

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Callie Anne LOVES attention and being in the center of the party is a little slice of heaven for her! She loved playing with her sweet friends and showing off for all of her guests. Her new thing is giving hugs and kisses. Apparently Piper and Ainsleigh love it too and there were kisses everywhere!

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As expected, she was more interested in the wrapping and tissue paper than the gifts, but we will bring out a few each day for her to explore. Our friends and family were so very generous and we are extremely grateful.

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We asked for donations for the CranioCareBears for their hospital care packages and can’t wait to make a huge donation of goodies in Callie Anne’s name!

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Since Callie Anne doesn’t take much food by mouth, I was a little nervous about the birthday cake, but she didn’t really like it that much so it wasn’t a problem. Less clean up, too!

What is this???

What is this??

We all had a wonderful time celebrating this tough and feisty little angel’s first birthday! Thank you so much to everyone who came to celebrate with us and all who were there in spirit. We are grateful for all of you!

Here’s to another wonderful year!

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On the road to fingers and toes

October 31, 2013 by Jamie Cook

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As most of you know, unless you’ve been living under a rock, the Cook family has had another eventful week. One week ago today, Callie Anne had her 4th surgery, which was the first of 2 that will give her 10 fingers and 10 toes! Each surgery requires a full day of pre-op appointments where they do measurements, paperwork, bloodwork, and meet with the surgeon. We started out this time with a trip to the Dallas Arboretum bright and early Tuesday morning with another craniofacial syndrome mom and her little girl. If you are ever in Dallas in the fall, it’s definitely worth the visit. CA liked the pumpkins there a little more than she did at our local pumpkin patch and we got to visit with April.

Dallas Arboretum & Botanical Gardens

Dallas Arboretum & Botanical Gardens

After an hour or so of pumpkin heaven and many photos, we headed to Medical City Hospital for what we knew would be a very long day for all of us. (this isn’t our first rodeo!) The anthropologist at The Craniofacial Center, Dr. Kolar, got new measurements of her skull since surgery and was very pleased with the results. Her head circumference was actually ON the growth curve for the first time instead of way below it. Across the hall, they took more pictures of her hands and feet that will assist with the surgical plan, as well as help track the progress. We had about a 2 hour gap in appointments and we all got pretty restless!

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When we finally finished up, we all took a little rest at the hotel before heading out to Lewisville to visit our friends and their brand new baby girl, Riley. Callie Anne had never met a new baby before and really wanted to play with her. And by “play” I mean lick her face and grab her ears. I couldn’t get over how tiny and precious she was and I honestly can’t remember my own big girl ever being that small, even though she was for the first 5 weeks!

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Camma & Poppy arrived Tuesday night and we all began preparing ourselves for another big surgery day. It’s all becoming a little routine for me now and I’m becoming a master at packing just the necessities. She had an early surgery time for this one, so we were scheduled to be at the hospital at 6am. And that’s when the chaos began…

As we were packing everything in the car, somehow the automatic locks kicked in and Callie Anne was locked in the running car in the parking garage. Now this was already a tense morning and I was on edge just preparing myself for the surgery and stressful recovery. Hearing my baby crying and screaming inside the car and not being able to get to her just about put me over the edge. We all scrambled to figure out a way to get to her. I’m sure the poor hotel security guy thought I was a complete basket case because I was crying so hard I couldn’t breathe and screaming at everyone. Not my proudest moment. It was 6:00am (hospital check in time) and the locksmith said he would be there in 15 minutes. Needless to say, he wasn’t. I was humiliated as I called the hospital admissions desk in tears and told her that we would be late and we had locked our child in the running car. So, after calling the guy many, many times, we decided…40 minutes later…to just break the window. I truly think Butch and David got some serious satisfaction out of the whole tire iron smashing of the window and I kind of wish I had done it. I could have used the release! After clearing the broken glass out of the backseat and hugging my baby girl so tight that I’m sure she couldn’t breathe, we were finally on our way and were swooped right to holding only 45 minutes late. Everyone knew what had happened by the time we got there. I can’t imagine the conversations that took place before we arrived. How embarrassing! I was pretty much done emotionally already and didn’t have much left to deal with the fact that she was about to go back into surgery only 4 weeks after her cranial vault. Maybe that was a good thing. We took more pictures of her sweet hands and feet and sent her on her way.

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I actually slept a lot that day in between calls to the OR for updates every 30 minutes. We were so blessed to have my mom and Butch there to take care of us. I don’t know how families without good support systems can get through things like this.

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The surgery took a little over 5 hours and we were reunited in recovery. She was pretty doped up and out of it which I was fine with because I knew that as soon as she saw those big purple things on her arms and legs, it would not be pretty! They had to put the IV in her scalp because, well, where else would they put it? Everything was covered. It was a little strange, but I was able to overlook it most of the time. It’s amazing what isn’t a big deal anymore after your child has had her skull cut open and reconstructed! She did great coming out of the anesthesia, but did need oxygen throughout the night. She was ok until we got to our room. And then the real stuff started.

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This little girl of ours is full of sass and independence. She was not at all impressed with her new accessories and made sure we knew it all day and all night. In the middle of the night she just sat herself up and let us know that she’d had enough. I’m so proud of her personality because I truly believe it will serve her well in her life. She knows what she wants and she is going to get it. She amazes me!

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The next morning, Dr. Fearon came in, took the foam off, and sent us on our way. It’s truly remarkable how quickly he gets us in and out of the hospital. He believes that children heal better at home and it’s definitely proved true for our Callie Anne.

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It was a very long and very trying ride home. Casts and car seats don’t go well together and she was really starting to feel the pain. David drove and mom and I had to take turns sitting with her in the back because I could only take a couple hours at a time seeing her in so much pain and frustration and not being able to help her. That first night at home was awful. Just awful. She was really hurting and couldn’t get comfortable. She would wake up thrashing around and screaming. I will have nightmares about it for a very long time. We slept holding her for the first 2 nights. I wanted to be sure that when she woke up hurting a scared, we were there to comfort her. Being home was difficult because she was in familiar surroundings, but not able to do all the things she could do before. My heart broke seeing the frustration on her face and the look in her eyes that just said she wanted me to fix it. And I couldn’t. She has since learned to play with several of her toys and enjoys the noise she can make by banging her casts on things. She was rolling and sitting herself up again by day three.

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Throughout the week, we’ve all figured out new ways to do things. We are all learning to adapt to life with casts and are 1 week in. Only 2 weeks to go. Honestly, I think we are better off in the casts than we will be when we start the dressing changes on the skin grafts, but that’s a thought for another day. Right now, I’m taking one day at a time.

Callie Anne turned 11 months old today. In this 11 months, I’ve learned more than I have in my entire 33 years before her. She is the most amazing person I’ve ever met and I know that all of this will be worth it when she has 10 little fingers and toes to play with! A dear friend with a new baby told me today that I’m her inspiration. She said she thinks of my strength when she’s struggling with lack of sleep, spitting up, and feeling lost not knowing how to help her son. It was so nice to hear that and I’m thankful to be able to give her that encouragement. However, when I’m struggling with medical equipment, surgical recoveries, and feeding tubes, I think of another mom I know who is in the hospital with her baby girl right now going through chemo for a brain tumor. She inspires me and makes me know that if she can do that, I can do this. You never know who you are inspiring or speaking to through your actions. Motherhood is a beast. It’s the most rewarding and hardest job there is, and we are all in the same boat no matter what our specific circumstances may be. It really does help to stop and take a look at the big picture. I’m thankful to be an inspiration to other moms and even more thankful for the moms who are my inspiration.

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