One of the Many Things Special Needs has Taught Me

You know when you have your baby and they come out seemingly perfect? You count their toes and fingers, ooh and aah over their cuteness, compare who they look more like? Moments we all look back on and treasure. Then you come home and "mom guilt" sets in. Am I feeding them right? Am I feeding them enough? Too much? Cloth or disposable? Home made baby food or bought? Public or private preschool? Soccer or baseball? Gymnastics or dance? Awana's or cub scouts? The list goes on and on. Then you start watching how little Sam over there interacts with his/her parents and they all seem to be in a bubble of love while your kid chases after their little brother with a rock and a look of passion for fresh meat in their eyes. You start screaming at the top of your lungs, your hubby goes chasing them down and all the while little Sammy is picking flowers for his/her mom. You just want to sit down and die. Your family never compares to the other family. You love your kids beyond measure but there is something wrong with them, right? They just never seem to behave or those times are few and far between. You feel like you are always a wreck and don't know what is working and not working when it comes to parenting. The fact is you are just tired because you are taking care of little people who can't do much without you and it takes two of you to accomplish what needs to be done in a day. And again you look over at the Joneses who have it all together and you don't understand what they have that you don't have.

Don't lie, we all do it. Maybe some of us more than others but, we all have our moments. We all have a different idea of what the perfect family looks like and it is never us.

And you know what my two little special super hero's have taught me? To not compare. I am not perfect and I still compare myself to other moms and my boys to other boys. But having kids with special needs has really taught me to not compare because I can't. I have to focus on the progress we are making as a family and how that is measured for us, not for you. I had a typical developing baby first who did everything fast and furious. Then I had back to back special needs boys who have come to their own milestones in their own time and in their own way. Now I have another typical developing baby who is like a little monster! Our family is so different from the "normal family" that there is no way to compare. It's apples and oranges and I'm grateful. I compare our life to what our life was a year ago and can be thankful for the progress in each and every child and in myself. There is no other family like mine so why compare to someone else's family? My kids don't compare themselves to what they can do by looking at others, they are excited each time they over come an obstacle. And my goodness, so are we!

Maybe you don't have special needs kiddos and are grateful for the health of your kids but this still applies. There is no other family like yours. Compare your family to your family a year ago. Celebrate the milestones or inchstones whatever they may be. Don't waste your happiness comparing your life to the life of another's. We have all only walked in our shoes and we know our kids better than anyone else and who they are - amazing kids.

 

What Was Supposed to Be Today

It is a weird day. Back in March after Nevin had the fun of going to the hospital and having a camera stuck thru his nose and had to say certain words and sentences we got the much anticipated phone call from the cleft team nurse that he was a candidate for surgery. Hurray! I was literally jumping all over the house and ready to scream for joy at the top of my lungs. It was an amazing moment. we scheduled our entire Summer around June 6, our surgery date. Then we were told to take him to have an MRI done to check out his carotid artery because another fun thing about 22q is that is screws up your anatomy in so many ways included the carotid artery. Yay! We scheduled it for 2 weeks before our post op appointment with our surgeon, plenty of time for her to review it. Well, two weeks ago we met with our surgeon and our world fell to pieces. First off, she did not do her homework on Nevin because she had no idea what she was talking about when it pertained to him personally. It was a very confusing and frustrating appointment that eventually ended in me saying,
"Well, what kind of surgery are you going to do on the 6th then?"
"What surgery? There's no surgery, who scheduled  surgery?"

For real. That happened. Not joking.

But! I refuse to live in that moment.

When the nurse came back we railed on her for awhile about everything and finally left with the promise from her that she would get us in to see the other plastic surgeon on the team. Sure. Whatever. It didn't sound hopeful. I started making arrangements to get into another hospital all together when she called and told us to come back the following week to meet with the other surgeon.

We walked into that meeting not very hopeful but were blown away by Dr. Linn and his knowledge and confidence. I really liked him. Nevin liked him. That gets another vote of approval for me. That kid can size up a doctor in 2.5 seconds flat. He never did like the other surgeon and I should listen to him more. Thankfully surgery is a possibility and is a go! We don't have a date yet but its a go.

Which brings me back to today. Today is June 6, the day we thought Nevin's speech would be changed for the better for forever and instead its been a normal Thursday. I am not gonna lie, it sucks. I wish surgery would have been today but its not. I know there is a plan and I have faith that everything will work out better this way. But I am a little sad today.

Mr. Gavyn

What a crazy school year we had. Since February when Gav started preschool it has just been like running a bus service. This was my schedule:

Monday:
Leave with 4 kids at 8am
Drop Skyler off at 8:15 (in the city at SCCS)
Drop Gav off at 8:30 (in Affton at Affton Early Childhood)
Come home
Put Gid down for a nap at 9
Get lunch ready around 11:15
Wake Gid up
Mom would drop Gav off from preschool (he got out at 11:30)
Eat lunch
Start getting kids in the car at 11:50
Drop Nevin off at school (Affton Early Childhood) at 12:15
Drive to the city to get Skyler, sometimes run an errand like bank or something drive thru by 1.
Come home around 1:15-1:20
Put Gid down for a nap
Load everyone up again at 2:50
Pick Nev up at 3:15
Come home and crash until it was time to make dinner

Hit repeat for Tuesday and Thursday but Wednesday take out Gav's preschool and add in 2 hours at PSKids. Friday take out all preschool but add in 1 hour of therapy at PSKids.

It was a little crazy. We tried the bus for Nevin but they kept forgetting to pick him up, one day they had him on the bus but didn't drop him off until an hour after he should have been home. It was a mess and I was a mad momma. Of course we took him off the bus. At the beginning of the year I had carpool for Skyler but once the bus started for Nevin I stopped carpool for Skyler because frankly I missed picking him up. Once the bus fell apart I just didn't bother. Even though it was batty I like being in charge of taking and picking my kids up. Good conversations happen in the car. Which was my favorite part of this whole process and one that I won't ever regret.

When Nevin was 18 months we wanted to start something with speech because we were concerned about his lack of words. We let a bad pediatrician convince us to wait and it was about 9 more months before we finally got him in a program. When Gavyn was 18 months I was getting worried about his lack of speech and no one was going to talk me out of speech therapy for him. I'm so glad we did it. Maybe he wouldn't have needed it but it gave him such a boost and he is such a talker! All of my boys are talkers. I love my conversations with Skyler because he can reason, he can think thru problems, he can negotiate, he asks tough questions. Nevin is obviously the hardest to communicate with but he has come SO FAR! It is crazy how far he has come and even though it is still frustrating I'm so thankful that I CAN have a conversation with him now. Not all the time but I can. And he is so funny. He is our little clown and just cracks you up and is so sweet.
His new thing is, "Mom, you love me?"
"Of course I love you Nevie. You are my Nevie!"
"Yay!" Big hug. :-)

And then there is Gavyn. That is a picture of him sitting on the steps at Skyler's school waiting for him to get out. Once the weather got nice we started sitting outside on the steps or in the grass and wait for the big kids. This was a typical "conversation" in the car with Gavyn on our 15 minute drive to Skyler's school.

"Oh mom! Coppee (seeing Starbucks)! You need to get coppee mom, you like coppee mom. Mom, you like coppee? You drive around and get it."
"Oh, McDonald's! I need a cheeseburger mom. Can I get a cheeseburger? You like McDonald's mom? I love cheeseburgers. (as we drive by and not stop) Oh man!"
"Mom, you get gas? We need gas. I need a swooshy drink. We need gas? You stop mom?"
"Where's the fire truck? I need to see it. Where is it? There it is! (as he sees the firehouse) I see the fire truck! It sprays water. It sprays water all over Lightning. *insert water sounds here*"
"And then there were zombies in the door. And I scared them. I get my gun and shoot them. The zombies come and eat your brains. *insert chomping and slurping* I get them with my gun. And the ghosts! *ghost sounds* AAhhh!!"
"Where's Skyler? Where's Nevin? Whatchya doing? Where are we? Where's my house?"
"I see Skyler's school! We get out. I need to sit in the grass. We sit in the grass mom? And Gideon, Gideon sits in the grass, you get him mom? I need to get out, you help me? I sit on the steps. You sit mom. Where's Skyler????"

On and on and it's hilarious. He really talks like that, clear as day and the most random things you can think of. We've tried to record it but haven't been successful yet. One day I will and I promise to post it.

Growing like a weed

 

This was Gavyn weeks ago at Cardinal Glennon having his final growth hormone test. It was a long day at the hospital. We had trouble getting an IV in, finally got an IV in, wasn't sure how he would do and had already wasted lots of time getting the IV in and he hadn't eaten since the previous night (oh yeah, you have to fast for this test, like EVERY test you get done it seems). We crossed our fingers and hoped he would fall asleep from the meds. He did! I was scared to death to move the DVD player or turn of Chugginton in case it woke the beast. Once we were ready to leave our nurse told us it would take a couple weeks for the blood results to come back. Boy was I surprised to get a call from our Endocrine two days later with the results! Of course he was low and we were ready to start the hormone process. We had our meds by the next week (exactly a week later actually) and scheduled our training for two days later.  

 

 

This is the first Monday we started growth hormones...

 

This is the next week on hormones...

This is last Monday... Wooh! He's alrady grown about 3/4 of an inch.

Wheelchair Kid

 

And this....

On the 19th we went to this awesome event at the Zoo called 22q At the Zoo! Zoos all over the world held the event to raise awareness for 22q. It was a day all about Nevin and things he loves. The kid loves animals so much, it was perfect! We met some really great families and some amazing kids and felt connected and grateful to not be alone anymore. We came home exhausted and rested, cooled off for a few hours. I decided to fill the pool and let the kids play. They were in and out of the pool, playing in the yard, running inside, being kids and having fun. We ate some dinner and out they went again. Then it happened. Nevin fell off the monkey bars right onto his left heel. He was screaming and crying. Ryan scooped him up and brought him into the house. I got the ice out and held it on his foot. He calmed down and when I felt around on it he didn't complain and it wasn't swelling immediately. I was hopeful everything would be fine. Of course not. After about 30 minutes of sitting he tried to walk and collapsed on his foot. Off the Cardinal Glennon we went. We waited a total of 4 1/2 hours in the ER and had X-Rays done on both feet. Eventually the could see the crack on his heel and casted him. And yes, he needed a wheelchair because he has to stay off of it as much as possible so as to not shatter the heel completely. Fun. He looks good though. ;-)

You would do the same

Here is my funny story from last week....

Gavyn started on growth hormones about 4 weeks ago and is doing great! He gets a small shot once a day and will continue with that until he stops growing. The little shot system is awesome and very easy to do, it looks like an insulin pen if you have ever seen one.

Anyway... Once a month we will get a shipment from CVS specialty pharmacy that is over nighted to us on ice. It is super important to keep the medicine refrigerated to keep the potency of the medicine, plus if it goes bad it is super duper expensive and we don't have money to waste! Last week I reordered the meds on Tuesday, called Thursday morning for our tracking number and was prepared with a neighbor back up to be at our house to sign for our meds. If you don't sign for them they don't leave them (obviously). I checked our routing number and saw our delivery time was 3 o'clock, I signed up for the notification if the time changed. I leave the house at 12 to drop Nevin off at school and usually we just drive over to Skyler's school and sit on the steps and wait for him to get out at 1 because about time we get home there isn't much to do but get ready to get back in the car. After I dropped Nevin off though I realized I left Gideon's bottle at home. We went to the bank, then swung back home (about 12:30) grabbed the bottle and then went to Sky's school. After we picked him up we got gas and came home. As soon as I pulled in the driveway I saw the dreaded note on our door - they tried to deliver the package! I had even received a notification it would be there at 2:40 but oh no, they came at 12:40! They were probably coming down our hill as I was pulling out of our subdivision.

Pissed. Beyond pissed.

I called the number to arrange to pick it up because if they delivered it the previous day it would be ruined. I went through the prompts for the store to call me with when and where I could pick it up. In the meantime I got on the website to try and find a number or e-mail to complain. That was a joke. Every number I called gave me a run around and never a real person and each e-mail option you clicked to e-mail them also gave you a run around. I was even more frustrated. I double, triple checked that I had not misread the notice about the time. It appeared legit to me that it read it would be here at 3 and then changed to 2:40. Eventually the guy at the store called me and told me that our package would be at a location in the city (off Jefferson - not convenient to me at all) ready for pick up between 7-8. I told the guy I needed to complain and should I complain to him or someone else. He was very helpful and nice and wanted to know what the problem was. I explained the situation to him, about the delivery time, that it was meds for my son that needed to stay refrigerated. I was calm and nice but admit that I was very unsatisfied and that I had company coming that evening and now I was going to have to leave to come pick up our meds. He explained it was not his drivers fault, that the deliveries change last minute (I understand that) but that the website should just say end of day not a specific time. I went over it again with him and he was very confused why it would tell me a specific time when it should have just said end of day. Regardless, there was confusion and he wanted to help. First he tried to get his driver to redeliver it but he was already out of our zip code. The only other option we had was for me to chase down the driver, to meet him at a pick up address at a specific time and pray to God I didn't miss him. I was willing to give it a shot! Here's how it went down...

Thankfully, my father in law was at our house doing some things and told me to leave Skyler and Gavyn with him while he worked. I packed a snack, a bottle and  a baby up. Called Nevin's school and asked to pick him up 15 minutes early.

Drove to Nevin's school, parked in the handicapped parking, went in to get him with Gideon in tow. His teacher brought him out in his wheelchair but she was waiting for the Speech therapists to bring Nevin's book out (that's another blog) that she was writing in. I completely forgot it was the last day of school. As we waited for Christ I start telling Ms.Pam and another mom what's going on with the meds. They can't believe it. Finally, Chris comes out and they help me out to the car. Now the other parents are getting there for pick up and have blocked my car in! Ms. Pam starts to direct traffic and have people move as Chris helps me load up two kids and a wheelchair (that's another post as well). Finally we are off!

I double check my google maps and head over to our met point. By the way, the driver has a grace period of 15 minuets before or after the pick up time. That means I have a good 30 minutes of waiting for him if he shows up at the end of the time or 2 minutes if he gets there early. Gideon fell asleep in his chair (thankfully) and Nevin was very good about waiting in the car. I am on the lookout! Watching the busy street anxiously, hoping he won't miss us. After 10 minutes of waiting I see a truck coming up the street. Hooray! I get ready to jump out of our car when the truck goes down a side street and I don't see it again. Ok... waiting. We bust out the snacks and wait some more. The next thing I know another truck is coming down the street, goes right past us and never stops! I freak out, did I miss him?!! It's getting closer to 4 and I debate on calling the store back. Finally I decide to stand on the sidewalk to really make sure I hear the truck and can see all sides of the building. It starts to rain. For real! I'm standing on a sidewalk, waiting for a truck, in the freaking rain with two kids in the car. What kind of comedy movie did my life just enter?! Finally at 4 o'clock just as I'm picking up my phone to call the store and tell the guy I missed him the driver pulls up. I run over to him with my ID's ready and this is his response,

"Honey, no one else is standing in the rain trying to rip a package off of me. I trust ya!"

Ready, set, GROW!

Gavyn saw Nevin's endocrinologists Dr. Myers at the beginning of the month. She is so funny, brilliant, super ADD, but brilliant. You have to be ready with every question and be on your toes otherwise she will spend two minutes with you and be gone. But if you are prepared and keep shooting questions at her she will spend a lot of time with you and be very thorough. I have gotten used to her quirkiness. Of course she took one look at Gav and knew he had growth hormone deficiency. We got an xray of his hand, blood work and set up a time for the four hour blood work test they have to do to prove the deficiency for insurance. We just completed every thing this week and amazingly got the results already! Our first shipment of hormones comes next Wednesday! Yikes! I have to take it all back to Dr. Myers when it comes and get trained on how to give it to him. It's a shot that he gets once a day, every day. Hurray - not. I'm seriously going to make Ryan do it because I have to do all the other mean things with them. I know in the long run he will thank us but right now he is 3 and will hate us. Oh well. Watch out world, a bigger, stronger, faster Gavyn will be coming your way.