Back in June we embarked on another journey to blended diet land. I must admit that in the beginning I was unsure, overwhelmed, a little lost, but I knew one thing...I just wanted Christian to be healthy. And no vomiting.
Just a quick synopsis of what led to the decision to go blended: Christian threw up from the first formula feed he had after his accident, sometimes multiple times a day, but every day without fail. Then we changed to an elemental formula that was easier to digest. But the vomiting and reflux persisted for months. We finally visited our first GI doctor who gave us the miracle of Renitadine (an acid reflux med) and that cured all, it seemed, for about a year. Then we switched to the keto diet, which didn't give us any stomach issues with vomiting but did give Christian a lot of constipation. As soon as he came off of the keto diet he started throwing up again. And then it got worse and I couldn't understand why! It was the most frustrating thing! How could something that used to work just no longer work anymore? We were using the same brand of formula, the same medicine for reflux, the same volume, what the hell?!?!
Enter the blended diet.
I first started to introduce it when Christian just wasn't holding feeds. Or he would throw up at least one a day in a large volume. In anticipation of starting the blended diet soon I had purchased a Ninja chopper/blender. So I had that on hand to blend up some banana and avocado. I really didn't know what I was doing. I just tried to figure - what would I feed him if he were sitting down at the table right now asking for food? He held it down better than the formula because, at the very least, the blends were thicker.
And the blending commenced.
I've learned a lot about calories, foods, allergies, and combinations. See, it's all well and good to think - Oh, I'll just give him this! It's 300 calories. But Christian has issues with volume and speed. This means that he can't tolerate large amounts of food pushed into his stomach at once. That is a sure fire recipe for it coming out Exorcist style all over you. So if 300 calories makes a blend that is 300mL and Christian can only tolerate half that in one feeding, well that's only 150 calories. And we're shooting for 1000 a day! This is where it gets hard and this is where we have to get creative. In the beginning of our blended journey he actually lost 3 pounds and I freaked out thinking I was doing a horrible job and what was I thinking and why am I doing this.
But we finally got into a groove. The most immediate benefits were his digestion and constipation. He went from constipation + Miralax = earth shattering, spackled blow outs every few days that were so vile we needed a hazmat suit to change it, to consistent regularity. They don't smell nearly as bad and they come every day without fail without Miralax. They don't hurt him, he doesn't strain, and he's a lot more comfortable. By the way, I have never talked about poop in my life as a conversation topic as much as I have in the last few months, just for the record.
Other benefits are that he's a lot more alert, he gets a variety of foods, it feels like he's eating what we eat and it feels less medical. Benefits also extend to me - the Mommy! One of my favorite things about Christian's new diet is that I get to prepare it and I take a lot of joy in that. It does take work, it does take a lot of preparation, but I do it lovingly counting calories and blending knowing that I'm cooking for my son.
We are not perfect at this. We are not purists. So if we have something for dinner that is well rounded, it goes in the blender for Christian. I also have some quirks I've developed like I make two blends every day. Here are examples of Christian's menu:
1 Greek Yogurt
1 cup of Cheerios
8 oz. apple juice
1 jar of baby food (peaches, apple cinnamon oatmeal, or something high calorie)
Frozen strawberries or blueberries
...and some other stuff
1 Bushel of Kale or Collard Greens
1 jar of baby food (high calorie meats)
1 jar of baby food (squash or sweet potato)
8 oz. of apple juice
1 boiled chicken breast
1 cup of whole wheat pasta
2 tbl. of olive oil (for calories)
1 scoop of protein
...and some other stuff
I make two blends because I just don't like the idea of blending everything together. Nobody told me this was bad and if I can bring myself to do it, it won't be so hard to think of things to make these two blends 1000 calories each. It's just a quirk I have. Fruit and meat blended together? Gross! Some of the fruit blends I make him I'd eat myself, they're so tasty! I should get over it, because, like I said, it would be easier to make one blend a day. But right now, we're doing two.
The examples I provided above are by no means absolute. We trade out. I've added peanut butter and Nutella to boost calories but it seems he has tummy troubles when I add these so I don't anymore. I've added Nutrigrain bars, apple sauce, graham crackers, and homemade mac and cheese. I use apple juice because it's great for constipation. The dietitian isn't a fan because of the sugar but it also has calories so for now we're sticking to it. It's harder to find calories when you can't add a lot of dairy. And another thing, I'm not really that comfortable with cooking meats for his blends other than boiling chicken breast. So for now we do baby food meats, which are already blended and have the calorie count right there on the jar.
We found out Christian was having trouble with dairy after I took him off of it for a week to see what would happen. Nothing happened when I took him off the dairy but when I put him back on it, he started having some diarrhea. The pediatrician suggested adding Greek Yogurt (which is super delicious, by the way, and I think Christian should share this with me) so we do that and we also sometimes add scrambled eggs and instant breakfast powder for extra calories.
With us, it's all about the calories! That's why we use olive oil, too. Since Christian doesn't like a lot of volume, we have to pack as much into each blend as possible. The bigger the blend, the more calories we have to fit into it. And each blend is loosely calculated to 1000 calories each, which gives us 2000 calories for two to three days.
Because I'm paranoid about calories, I also added in 200 calories on a slow feed over night of his old formula. This gives me piece of mind that he's won't be seriously hungry when he wakes up. It also gives me piece of mind that he's getting that extra oomph of calories at the end of the day.
Good things for Christian's body - Kale and collard greens and banana and avocado. Both banana and avocado have a good amount of calories. Avocado is like calorie gold. Kale loves Christian's digestive system and Christian's digestive system loves kale. Do I ever eat it? Hell no. But it's great for Christian, so it's a regular on our menu. I just steam up a whole bushel and it all goes in.
So that's what Christian's menu looks like. It's a work in progress and I'm always experimenting with new things and new ways of giving him food. We don't use a pump for his blends because they're too thick and his stupid pump won't budge. So we bolus the blends (push the food in by tube with a large syringe). But we have to do it slowly. I leave him hooked up to a tube with the syringe at the end with food inside. Then I leave him to sit and play with a toy or watch the window blinds (he loves that) and every time I walk by I push a little in. It works for him. And since I've been doing it like this - no reflux or throw ups.
There you have it. Christian eats food through his tube. What I've explained works for us and us only through trial and error. I tried many times to follow what others were doing and when it wouldn't work for Christian I'd get really frustrated because that's how it's SUPPOSED to be! I had to ditch that attitude and go with what works. 80% blends is good enough for now with the 20% formula over night easing my calorie stress.
Just for your information, Christian is doing amazingly well! I seriously thought he would be out of it for days but he is alert, moving around, his incisions are looking good, and I'm excited about it.
We got a couple donations so thank you - you know who you are! We are so grateful! Please consider donating to help Christian and his friends participate in their first race!
MyTeam Triumph is an organization that makes it possible for children, teens, adults, and veterans who have disabilities to participate in endurance events they wouldn't normally be able to participate in. Participants are referred to as "Captains" and they ride along in a special wheelchair pushed by "Angels" who help them cross the finish line.
Here's a short clip of where this all started with Rick and Dick Hoyt. I dare you not to be inspired...
(I retold the story of this video and I got goosebumps just retelling it again.)
Friends of ours have recently brought myTeam Triumph to Southern Arizona! And there will be a 5K race on September 17th. Do you know what this means? This means Christian gets to participate in his first race as a Captain! And Mommy and Daddy are going to be his "Angels!" (Even though he really is the Angel in this story.)
Because myTeam Triumph is new to Southern Arizona, we are raising funds to help provide the special adapted equipment for Christian and his friends to participate in this race. Please consider donating by visiting our fundraising page!
We have been blessed by donations from family, friends, and readers in the past for Christian's therapies, but there is something extra special about your contribution, should you decide to donate. It will not only help Christian participate, but it will provide the necessary adapted equipment for many kids just like Christian in future events! You'll not only be helping Christian, but other kids and adults with disabilities, too! Even if it's just $5, every little bit helps!
I love the idea of this race because picturing Christian crossing a finish line gives me goosebumps...again.
I love the idea of this race because it gives Christian legs and helps him run.
I love the idea of this race because it will help more kids just like Christian and it goes far beyond this 5K race on September 17th.
Today was the big day. The VNS has landed. And looking back on my facebook status updates, I used the word "Super" to describe a lot of things so I've already established a theme and I'm going with it.
If you're wondering what the heck a VNS implant is, the best definition was given by the super gifted neurosurgeon: "A VNS is like a pacemaker for the brain." - Dr. Wainand
He explained that just like a traditional pacemaker regulates the patterns of the heart and helps it work, a VNS implant helps regulate the brain and control seizure activity.
Super Smooth Pre-Op:
We arrived at 7:30AM for check in and surgery was scheduled for 9AM. We were also shown a huge TV screen with codes and each code represented a patient. As the patients moved from pre-op to the OR to the post-op, we would be able to track where exactly Christian was and at what time.
We took Christian back to pre-op and changed him into a kid-size hospital gown and tucked him comfortably into the big hospital bed.
Super Freaked Out:
After going over information about the procedure, I was informed for the first time that Christian would be intubated, which means a tube would be inserted down his throat to help him breath.
Intubated? Nobody had even mentioned that until right before the surgery. The reasoning was that because Christian still refluxes and throws up an intubation would help protect his airway. I still wasn't exactly happy about this. In the long run I wasn't surprised. This particular hospital is the same hospital that has a trache happy track record (this is where Christian got his) and they tend to be overly cautious, which isn't a bad thing. I just felt a little blindsided, that's all.
Super Man Departs:
It was finally time to say goodbye to Christian. There is something about saying goodbye to your child before he is wheeled into surgery that kicks you right in the stomach. I kissed him about ten times all over his face, but especially in my favorite spot. It's the spot right above the corners of his mouth where the cheek meets the nose. Then I watched his little blond head as the doctors wheeled him down the hall. I could have lost it right then and there.
Super Man Arrives:
After about an hour and a half, Christian was done! It was really quick! We were able to go back and see him and I was surprised by how awake and alert he was. He was moving around, whining a little, and his eyes werewide like saucers. He was already extubated and did great through the whole surgery without any hiccups.
Super Anxious To Get Home:
We finally were able to go home by around noon. Christian was hungry! He hadn't eaten anything since the night before so we had to get him home so I could make him a special blend that would be easy on his tummy.
By the time we got home Christian was red faced and a little overheated. And, although he did well on the car ride, he was pretty pissed by the time we were inside and all settled. I think it was a mixture of fatigue, hunger, and discomfort. But he cried for about two hours straight. Tylenol with Codeine cocktails were administered and that seemed to help but I seriously thought this might be our household for the next few days. I was worn out after the first hour of crying.
Super Sitting Up:
Because nothing else was working, I finally just sat Christian in his tumble form chair to see if he'd rather sit up. And whaddya know, it did the trick! He was finally comfortable enough to fall asleep right there sitting up for the next hour.
Super Man Is Doing Well:
Christian has been minimally agitated and he's tolerating food well. He's got an incision on his neck and an incision under his collar bone so we're very careful to guard that area for him. He's resting peacefully right now and has been for a few hours. The device has already been turned on to it's lowest settings. It will be officially programmed to probably a higher setting in the next few weeks.
I'm so grateful for all the thoughts, prayers, and messages that have been sent to us today! Christian is so lucky to have so many people on his team rooting for him and we are so lucky to have the support we do from our family and friends.
With every surgery there is risk. And in getting ready for the surgery, no matter how positive I was, my mind would still go to that dark and scary place of what if. So it makes it all the more relieving that Christian did so well and he's here, peaceful and breathing softly in dreamland. I'm hopeful that this device helps him to progress and we are so blessed to have this opportunity for Christian, but right now I'm just happy and content that my whole family is under our roof and not spending the night in a hospital. And that's super fantastic.
Christian will become a bionic boy around nine in the morning. At least that's when the surgery is scheduled to commence.
We've completed our bedtime ritual, complete with a new addition - washing with the lovely surgical soap. Christian's hands are soft and he's about ready to finally fall asleep. We're ready.
I could talk about feelings of nervousness and the risk involved. But I don't feel like doing that. Tomorrow is for serious medical talk and hospital jargon. Besides, I already had a talk with God and it's all good. Tonight I want to talk about fluff.
I really love movies. It's a family thing we do - rent movies at least once a week, pop popcorn, drink soda, turn of the lights - it's one of my favorite things. And it's something Gabe still likes to do with his parents so I'm latching on to it for as long as I can.
Anyway, there are some movies that have become different movies to me after having a child with special needs, facing death, hospital stays, learning to move forward and the like.
So here is my list of recent movies I've seen that have struck a cord/punched me in the stomach/stuck with me.
Lorenzo's Oil - I think I've mentioned this movie before. I had never seen it and it was made about twenty years ago, but it's about parents who will go to great lengths to help their son with a rare disease. Even if it only means that their findings will help other children and may not be as successful for their son, they still press on, relentlessly. It's a true story and they did end up finding a cure for this very rare disease, although they're real vision was to find their son's voice, which is a metaphor for finding him again through the damage caused by the disease.
Rabbit Hole - Rabbit Hole isn't about having a child with special needs but it is about grieving parents. The reviews of this movies used adjectives like depressing and heavy, but I absolutely loved every part of the movie. The heart of it is really about grieving parents and how they decide to move forward one step at a time. They don't know what five days from now will bring but they will make the first step today. It was brutally and painfully honest.
The Orphanage - Okay, this is a weird one because it's actually a ghost story out of Spain and it's all in English subtitles. I saw this movie before I had a child with special needs and at that time it was just a really scary, really well done ghost movie. But now that I have a child with special needs it has become a different movie for me. And I'm a little embarrassed to admit that I cried at the end. I don't want to ruin it for anyone and it does still scare the crap out of me. But it ends up being a well told story that hit a little close to home for me. And it's a ghost story! Who knew?
Horse Boy - Horse Boy is a documentary about parents who, again, go to literally the ends of the earth to help their autistic son. And some of this is done by horseback. It's a beautiful and inspiring documentary and every time I suggest it to someone they look at me like "Horse Boy? Okay, crazy lady." But I'm serious! Watch it! It's available on Netflix.
Steel Magnolias - Yes, seriously. I've seen this movie probably around fifty times throughout my life. I didn't always cry over it but it has always been one of the chick flick movies to watch. It's like part of some womanhood initiation or something. But with my life and death nerves heavily exposed it became a different movie for me. The part where Shelby's mother (played by Sally Field) looses it at the funeral and unloads her anger and sadness on her friends - am I the only one who looses it myself while watching this scene? It was like the primal scream for all who have grieved, are grieving, or will grieve.
I suppose I better get to bed. As I mentioned before the fluff we have a big day ahead of us. Please keep Christian in your thoughts and prayers tomorrow. We're hoping for a quick surgery, speedy recovery, and even faster results.
We have now completed a first, whole, week of school for Christian.
This is a first, whole week...without Mama...without me.
I was nervous on Monday because Christian gave me a hard time in the morning. He was grumpy and upset and I thought maybe I should just stay with him through school one more time. But when we arrived at school, he didn't even flinch. The aids reassured me he'd be just fine. And I took a leap of faith (one of many these days) and I left him.
I wasn't emotional, I was maybe a little lost. I mean I had Lola, but what were we going to do for the next two and a half hours? She didn't know either as she was just as confused as I was. I loaded her up in the van and she looked over and pointed to Christian's empty seat. She asked where Christian was in her baby gibberish piecing together her version of "Christian" with inflection at the end of her jargon to signify - Where the heck is my brother?
After two and a half hours of twiddling our thumbs it was finally time to go pick up Christian!
To my surprise (again, I shouldn't get so surprised all the time because Christian always has tricks up his sleeve), he had a great day! No attitude at all! Was that morning just his version of a temper tantrum thrown by a stubborn three year old? But now he's on his best behavior for his teachers? Could this mean he actually enjoyed being around other kids? Does this mean he may need a break from Mommy? Well, that's just crazy talk.
I was so excited to hear such a great report. And after making sure to hit every blue, square, handicap accessible automatic door button on the way, Lola marched up to Christian and patted his leg as if to say - There's my brother!
The week got even better. The next day after dropping Christian off at school (again, all by himself) the vision therapist caught me in the parking lot on my way out. She was so excited and I love when therapists and teachers are excited about Christian! She said the ways in which he's using his vision and tracking are indicating that he is using his brain to process the information he takes in visually. She said she wants to go slowly but by what she is seeing we may be able to use this strength for a future communication device. Meaning, we can use his vision to tap into what he wants, what he likes, etc. All great news!
When we came back to pick Christian up the physical therapist reported that he tracked a toy up and down while in the prone position (on his tummy, holding his weight while propped up on his elbows and holding his head up). And he did this for 6 1/2 minutes! She was excited, too, and surprised!
One of the things about Christian is at first glance, people don't expect much from the kid. So it's always a little entertaining for me to watch them discover that he is, in deed, in there. He does have abilities. He does have a personality. He does have likes and dislikes and he's learning more and more how to express that with the abilities he has.
I'm not offended by them not expecting much from him. But I do love when they come back, excitement and surprise in their eyes, with - "Christian did this...and he did it for this much time...and he tolerated this...and can you believe it?!"
Yes. I can believe it.
The last day of school was complete with some good ol' "Open, Shut Them" circle time with the other kids and I was told Christian enjoyed it. (He likes having his hands clapped.)
Christian will go to school next week for two days but then he has his VNS surgery on Wednesday. He'll probably be out of school for the next two weeks for recovery. We chose this kind of timeline so his teachers would get to know him a little before VNS and then after VNS. This way we can gauge progress.
This wasn't a sad or emotional week for me, leaving my boy at school. In fact, while I was away from him I would wonder what he was doing and I would feel so much joy and peace and fluttering of butterflies because I am so proud and grateful all at the same time.
You know that boy that wasn't going to make it that night? You know that boy that literally died and came back to life? You know that boy they said would never do anything? The boy they said may need a trache for the rest of his life? Well, I'm about to go pick that boy up from school.
Well, that surgery is a week from today! It snuck up on us just like his third birthday and just like the first day of preschool.
But, also remember how I said I wasn't scared? Well, I'm not scared...just a little nervous.
I've discussed it with myself a dozen times:
What if it makes things worse? Should we really be doing this? What if there are complications? What if he's in pain? Will this be too much for him? What if it doesn't do anything? We've been through that before but is putting him through surgery worth it? Will this make things better?
And this track just repeats over and over again in my head. On his best days I wonder why we're doing this. But on his worst days, when he cries all day, I think we should have done it yesterday.
The truth is that I'm used to his seizures. They're small and short. They've changed over time and we've learned to live with them. And I think they may have brought on his smiles.
There is a period of time after Christian wakes up where he has seizure activity. He used to have a continuous and rhythmic jerking that would occur in clusters over the span of 30 minutes. (No, it wasn't a 30 minute seizure.) Waking and falling asleep are times where a lot of seizure activity can occur in kids with epilepsy. That's why when children go in for EEG's, sometimes they are required to be deprived of sleep. I guess that's when the seizure party starts.
Anyway, during this post sleeping period Christian used to jerk with his head and eyes to the right. It was suttle and rythmic, one at a time. Then after the 30 minute period, he'd snap out of it and it was back to regular Christian. This period has changed over time and weaning of seizure meds. At one time it was extremely physical with his arm jerking him over, almost knocking him off the couch. And at some points this period has subsided and gone away completely. Right now, it's not as long a period. It only lasts about 10 minutes. But now it's the BEST 10 minutes of our day.
Instead of jerking, he smiles. It coincides with this time and I'm pretty certain it's related to seizure activity but I don't care. I'll take this over nothing. It's a little desperate, yes, but when given the choice between no smiles and smile seizures, is it really a choice?
Below is a video of what this looks like. And if you listen very carefully over Dr. Phil blaring from the TV and me trying to coax Christian to smile (because he will respond to stimulation by smiling even during this seizure period), you can actually hear him make a sound while he does this that sounds like it could maybe be a little happy sound.
And then after the 10 minute period is over, it's over. He won't react the same way, in fact he gets pretty mad if I tickle him and yells at me. It's over until next time he wakes up.
I know the VNS surgery is supposed to take seizures away. But if this is Christian's version of smiling...and it has to be accompanied by a seizure...what if VNS takes it away? I don't want it to go away.
Out of all things you can do to get through a journey like ours, connecting with others is probably one of THE MOST important things you can do for yourself. In fact, it's probably a good idea for all parents to connect with other parents once in a while, but especially parents of children with special needs.
For the first year of having a child with special needs, I knew not one person in my town that had a child with special needs. I knew plenty of parents online who I love, love, love and I could have been the queen of online playgroups, but human contact is always a good idea at some point.
So through a series of coincidences and knowing someone who knows someone who knows someone, a friend of mine suggested starting a playgroup for families with children with brain injury and cerebral palsy and she read my mind!
It doesn't really matter what our kids have or don't have, because honestly, play dates are for the parents. Especially our kind of play dates.
For our second play date we decided to hit Ben's Bells last Friday night for open studio!
And it was a Moms only play date. Yeah, buddy.
Usually, open studio is where the public can go and paint ceramic pieces that will be used for future bells. You don't need any artistic ability either! And it's still a lot of fun.
Our duty at Ben's Bells was to paint Kindness Coins. Ben's Bells has programs in our local schools teaching how to spread kindness and combat bullying. In fact, they have a program at both Christian's elementary school and Gabe's middle school. Kindness Coins are given to the children to pass along to others who they see spreading acts of kindness. So we worked on painting Kindness Coins.
Then there was another really cool upcoming project we could participate in. If we chose to sign a kindness pledge (basically pledging to be more kind to others) we got to choose a colored, round, tile to paint our name on that will be part of a mural constructed locally, downtown.
So my first inclination was to write "Christian's Mommy" as seen below. But then I didn't want to leave my other kids out of the mix and it was too late. So I painted three small hearts on the bottom for each of my children so the others wouldn't feel left out. I don't think they care but whatev.
Our finished tiles...
A Ben's Bells bench.
Our play date wasn't over yet, though! We then stopped for pizza and beer and it turned into the best play date ever. It wasn't just a "night out with the girls" it was much better. We talked about what we used to be like, we talked about our kids, we talked about TV shows, we talked about our kids' therapies and what we've tried, and we laughed a lot. It was so awesome to be surrounded by other moms who have special kids, but who are not defined by it.
We also talked about how much we loved our kids and I thought of those moms when I read the last few sentences of a story to Lola tonight before I put her to bed (or, I should say, before she refused to go to bed).
I Love You So...
By Marianne Richmond
(Thank you Suavardez Family!)
"...Even when I'm sick...and I can't get out of bed?
Do you love me better HEALTHY than with fever in my head?"
We ended the first week of school for Christian by calling in sick. Yup. Christian has a little fever. [Dislike]
I was a little bummed. It was supposed to be the first day he was staying without Mommy like a big boy. He must've known. In fact, I think he may have done it on purpose so he didn't have to go by himself. Well, it worked, Christian!
Christian attends school on Mondays, Tuesdays, and Thursdays. So Tuesday was our last day attending school and Christian actually surprised me. Shocking, I know.
We were sitting on the floor and Christian was sitting in one of his favorite positions - on my lap facing forward with his legs bent over my folded legs underneath him. When he's sitting like this and he's in an okay mood, he'll pretty much let you do anything to him. He loves attention!
As we're sitting on the floor, his teacher was tinkering around with a toy in front of Christian. It was a spinning top - the kind of spinning top where you push the lever and it spins faster and faster. It was about the size of a nerf football, maybe a little smaller, and it was silver, blue, and green.
I have to admit that I dismissed the toy. It was too small, too bland, didn't make loud noises, didn't vibrate, it wasn't close enough, waste of time. That was until the teacher moved it to the right on the floor in front of Christian and he moved his head to follow it (very rare for Christian). She moved it again and he followed it. She moved it close, she moved it further away, and he couldn't get enough. He tracked with his eyes, with his head, and he even closed his hand around the handle several times and then let go several times.
This went on for twenty minutes. Twenty. Whole. Minutes. that Christian paid attention to something.
Now Christian's vision therapist has offered toys and gadgets that vibrate, light up, pop beads, make loud noises, toys that cost $150 because they have a "special needs" label on them. Christian has entertained these toys every once in a while, probably just to please us.
But all it took was a spinning top.
It's proof to everyone - even to me - that these children, my child, should NEVER be underestimated.
So how did Christian's first day of school go, you ask?
Well, first he got all spiffed up in his collared shirt. We got his flaming backpack together, grabbed all the necessary paperwork for registration...
...and five minutes later he fell asleep.
But he wasn't getting out of his first day of school that easily!
We started out the day at 9AM. We were greeted by the principal and the vice principal we met last Thursday. It's really cool that they were so present and interested in making sure Christian was ready to go.
We then headed off to his classroom, noticing all of the other kids on their first day of school learning to stay and walk in a filed line, one by one. I just kept thinking how we are so blessed to have this day. It could have so easily gone the other way and this day, Christian's first day of school, wouldn't have been ours. It wouldn't have existed. And this day would have been a sad one along with all the other days leading up to it and all the days following.
Even though Christian's first day was different than other kids his age, we were nervous and excited just the same.
As we entered the classroom, Christian was immediately scooped up literally and figuratively by the school OT. She was so excited to see him. She immediately started working with and getting to know him. The PT and OT spent a lot of time with him this morning and the vision therapist popped in to say hello and talk about positioning while working on vision exercises, as well. She said she'd be coming every day for a while. Great news!
We found somewhere to sit, but it was for big kids so we had to modify it for the time being until we get the right seat for Christian.
And he was so worn out by all the attention, he decided to take another nap.
Good thing the aide was willing to sit there the whole time to make sure his head didn't fall to the side and wake him up.
Then we thought we caught some smiles!
But Christian was too fast for Mommy. And every time I'd snap a picture, he'd stop.
And every time I clicked the button, he'd do it again! Stinker! I'll get it next time, Christian! Just you wait and see!
All in all it really wasn't like a true first day of school. There was a lot of education but it was on my part educating the staff on how to move Christian and how to make him happy. Christian is the youngest in his class so he'll be doing some double dipping in the other special needs preschool classroom. The teachers and therapists invited me back tomorrow so we could smooth out a couple more things. And can I just say that educating people about Christian is exhausting! I just concentrate on the day to day doing but actually sitting down and explaining everything in moderate detail even makes me exhausted just talking about it!
Oh yeah, he normally doesn't sleep this much, but he was so tired out that he took ANOTHER nap when we got home. Poor Chrissy. School is hard!
We are tired and worn out from the day, but definitely thankful this day existed.
By the way, he wasn't the only one with a first day of school...
Gabe started his first day of 8th grade.
In this picture he's wondering what that funny smell is and why Lola's shorts are wet.
And Lola didn't start school but she was being all cute and yelling, "Cheeeeeeese!" So I was forced to take a picture.
Tomorrow I have a list of things I have to get to. I have to stop at the pediatrician's office for shot records, take Christian to his first day of preschool, make a few phone calls, and take Lola to ISR.
Did you catch that?
Christian is going to his first day of school tomorrow.
Christian is going to his first day of school tomorrow.
CHRISTIAN IS GOING TO HIS FIRST DAY OF SCHOOL TOMORROW!!!
Can you believe it? 'Cause I certainly can not!
Last Thursday we were scheduled to meet with his new teacher (which is a different teacher than I originally met on our tour, and it is kind of disappointing because she was such a big reason we felt comfortable there, but I digress) and when we got there we were met with a team of people. The principle, the assistant principle, the PT, the school transition specialists, and, of course, the new teacher met us. I am continuously impressed by their interest in Christian and their wanting to get to know him and what he likes and doesn't like. They take notes and ask questions. They ask about equipment he might need and they're supportive of making this the best environment possible for Christian to thrive.
So like the overBEARing Mama Bear that I am, I will be spending the first day with him in his new school so I can see what he'll be doing every day and so I can show everyone what he likes and what he doesn't. I am his voice so I have to tell them for him that he may not like loud noises or bright lights. Christian's dad laughed at me but I don't care. I want to see his class in action for myself before I just leave him there.
Now, this is only the first in many baby steps made toward possibly transitioning to the main special needs classroom (we'll see how it goes). He'll only go three times a week for about 2 1/2 hours a day and during this time he'll get some PT, OT, music, speech, and sensory stuff mixed in with the regular curriculum.
So my boy has a new haircut and a new backpack with red flames on it. Because he's on fi-ah! Okay, that was corny but I'm just so excited.
To be honest, I'm so excited because this experience - sending my baby boy to his first day of preschool with a fresh haircut and new flaming backpack - is a gift. And I am overjoyed to receive it.
Speaking of a gift...look what came in the mail!
It's a bib from Hip Violet we won during Cici's last auction and it's made extra large for when big boys like Christian get the droolies. They're customized and so well made. I got to pick the print of the bib and the applique and since I believe Christian can go to infinity and beyond, a rocket and space theme was perfect and mighty stylish if I do say so myself. Check 'em out! They make some pretty cute stuff.
So here we go...first day of school...do you think I'll cry? Probably not tomorrow because I'm not leaving. But the next day all bets are off.
Then it was off to Mexico to celebrate both of my boys' birthdays.
Ahem...I have a 13 year old now. Yes, I do.
And he really does smile if you can catch it.
Christian got to swim with his Nana under the waterfall.
I'm pretty sure he liked it.
And Lola was...
...well, she was just Lola.
And why am I sharing this?
Because I learned some things in our recent travels and here it goes:
THINGS I LEARNED WHILE TRAVELING:
1. Don't stick to plans and learn to make new ones. - I made the mistake of thinking I could plan things during our trip to New York. In fact, it got to the point where I would get angry at plans that were not turning out. After cancelled and unavailable flights, we were stuck there for three extra days. I learned my lesson.
2. Handle with care. - While waiting at a train station in Rochester, a homeless man (at least I think he might have been homeless) came to sit on the bench close to us. He was a talker. He looked at Christian and asked, "Is he slow?" It almost made me want to laugh at how juvenile the question seemed. I just thought - Dude, you don't know the half of it. I wish "slowness" was our problem. I told him Christian's story, because I'm not shy about it. And do you know what he did? He reached into his bag and pulled out a brand new bottle of Purel. Now, the man was not dirty by any means, but he rubbed his hands in Purel and touched Christian's hand. He mumbled something about Christian being a true miracle and then he wandered off. I guess what surprised me is that he innately knew that Christian should be treated and handled with care.
3. Nonstop flights across the country with a one and half year old is never a good idea. Ever. - Will not do this again. Three of the four hours in tantrums = worst idea ever. Apologies to the other passengers.
4. Plans? Chuck 'em. - It wasn't until we got to Mexico at the end of the month that I really grasped (or re-grasped, I should say) that it's okay to let go. In all truthfulness, it was the heat and humidity that made me do it. There came a point that I realize, we just have to 1) follow what the kids feel like doing and 2) follow what we feel like doing. The moral of the story here is when plans fall through, chuck 'em. That's when the real fun begins. And, yes, I know this is the same lesson as #1, but it really had to be tattooed on my forehead for me to finally get it.
5. Family vacations make my life. - Before Christian's accident we travelled with him. We have beautiful pictures of him sitting in the salty waters of Key West and giggling at Disneyland. Those are some of our best memories. After the accident we vowed (with defiance) that this would not stop us from traveling to new places. We would still make memories with our family the way it is now. And we've come through on that promise to ourselves, I'm proud to say. It makes us who we are and every single memory I have traveling with my children, even the screaming on the airplane memories, make my life. They are my favorite.
And it was a beautiful day, just as the day he was born.
Leading up to this day, the thought of his impending birthday gave me butterflies. Every time I would think about it for a minute I would feel a great deal of happiness and joy.
Although I may not be able to articulate this feeling of joy as well as I'd like, let me explain.
Christian was a very wanted child. Not to say that my other children were unwanted or anything like that, but Christian is ten years apart from my oldest. So in a lot of ways he was like another first child. He was planned for, there were new baby necessities, we decorated a nursery in green and blue, and we prepared.
Thinking about his birth only makes me happy. I remember how much we anticipated him and how excited we were to bring him into the world weighing in at 9 pounds...and a week early!
His birthday doesn't make me sad. It gives me joy, in fact. It's the day that connects the Christian I gave birth to with the Christian I have today. And if those two boys share nothing but identical genetic makeup, name, curly blond hair, and fair skin, they, too, share that blessed date of August 1st.
That's something to feel joyful about. It's something to celebrate.
I wanted to celebrate in a different way this year. I didn't feel like having a birthday party was quite the right way to commemorate my little guy's birth. He wasn't much impressed with a party last year or cake or the Funyons that fed all the other eager children running around hopped up on cherry sours.
So I thought - Let's do something Christian would like to do.
He loves the ocean. I play CD's with ocean sounds to calm him. Every time we've taken him to the ocean a calm settles over him. As I mentioned last year, when I was pregnant with Christian, we used to plan to bring Christian back to that very beach to put his feet in the sand.
It was decided.
We took our boy to the ocean for his birthday.
We laid him right there on the beach and Daddy rerouted a lazy river headed back to the ocean at low tide so it would flow under Christian. He felt the sand and it was so warm, there was no way on earth that boy would catch a chill. And when we were all done we carried him back up the beach with a curly, blond head full of sand.
It was a beautiful day.
And just like last year...can't forget little sister!
More from the ocean, coming soon...
The day you were born was and is one of the happiest days of my life. As long as I live I will celebrate you. I have many birthday wishes for you, but the biggest one of all is the same wish I held for you on the day you were born - that you are happy and healthy. Happy birthday, my precious boy.
This is the story of Christian and his family. On July 8, 2009, Christian suffered a near drowning at the age of 11 months old. Miraculously, he was brought back to life and has been fighting ever since. Because of the lack of oxygen to his brain, Christian experienced an anoxic brain injury. He is now relearning everything from moving to eating to even thinking. As his family, we're faithfully and devotedly along for this beautiful ride as Christian's journey is still being written.