I'm not sure where the first half of September went. I could barely believe it when I looked at the calendar today it said it was already the 16!
We are finding our groove with school, activities, therapy, homework and such. It was a rough take off but things are leveling out nicely. We have an incredible amount of help this year and that has made a world of difference. Our new roommate is super helpful in the mornings and evenings when she is around also, with her flexible schedule she is able to help when I need to run a kid to the doctor. My good friend Tina has gone through some major life changes and happens to be available to help me a lot as well. She even has a special day every week she comes! Thursdays with Tina - we love it. Of course my mom is always and will always be helping us as much as she possibly can. It takes a village to raise my children and I am ok with it. After doing most of this (doctors, school, therapy) on my own for 3 years I am accepting and welcoming the help with open arms. I am realizing more and more that we are meant to live in community and that means letting people into our messes in a very personal way. We have a small tight circle that knows all the dirty messy things that go on in our life (just like everyone else) and love us anyway. We are committed to walking through life with these people and they are committed to us. It is a breath of fresh air. It has enriched my life, my kids life, my marriage. I wish all families with special needs could experience the community we have. I know some do, I am afraid a larger percentage don't though. I know we did not for years, as I mentioned before. We are blessed to live by family, a lot of family and be close in relationship with them. That has always meant the world to us and I know a lot don't even have that. Anyway.... we laugh a lot about how it takes a village to run our life. Some days more than others! Thursdays in particular are crazy in the evenings with multiple kids needing to be at multiple places at the same time. We knew having a large family that was something that comes with the territory. Even with each kid only allowed to do one sport or one activity outside of school at a time that is still 4 things to get to each week. I know it will be a little nutty from now to eternity. Right now I am grateful for extra mom's to help raise my kids.
Monday, September 16, 2013
Saturday, August 24, 2013
School
The school year is in full swing! Nevin and Gavyn went back on the 15 and Skyler started the 20. In some ways this year will be calmer but when you have four boys your life will always be busy. This year the three oldest are in school but three different schools. Gavyn does preschool two mornings, Nevin has all day kindergarten five days and Skyler is in second grade. When we were picking schools for Skyler we found a fabulous small private school that uses the Charlotte Mason philosophy. It is everything I could ever want in a school, we love it, he loves it, they love our son, it is a great fit. When Nevin was ready for school though we knew he needed all the services public school can offer. He needs the therapy, he needs the pull out time, he needs a lot and our beloved private school can't offer him that. We put him in a great public preschool and he had lots of help! It was a great fit for him. When Gavyn turned three we knew we faced the same issue with him and enrolled him in the same preschool Nevin was still at. In my delusional mind by kindergarten Nevin would be ready to go to SCCS with Skyler but, obviously, that is not the case. Thus enters the year of three kids in three different schools. Right now we are evaluating the school issue year by year. The private school is a perfect fit for Skyler, the preschool is the perfect fit for Gavyn, I am having a hard transition to public kindergarten for Nevin but I think ultimately it is the perfect fit for him. Ryan tells me every time I cry about kindergarten that we need to give it a good try and if we decide it is not a good fit we will find something else. Honestly though, Nevin goes to school happy and comes home happy, I think it is a good fit. And when Gavyn is ready for kindergarten (2 years from now) we will evaluate where he will go.
What this year may bring
We have been insanely blessed this past year. Ryan landed a new job in the communication department at First EFree Church. He does the graphic design, communication, video type stuff. He loves his job and the people love him. It has been so good for our family after 8 years of financial struggles and 3 years trying to do freelance work. It is reassuring knowing when the pay is coming. We have had other doors, financially, open up for us recently as well. I knew it was a burden we had been carrying, I just had no idea what a load it was until it was gone. Having four kids is obviously hard on the finances but when you have two with special needs it really adds to it. There are many things we don't do or can't do. I am in no way complaining about this. We have had very supportive family that has helped us and gone above and beyond to help us make life good for our boys. But in the last six months, having so many doors open, having so many blessings falling down, it is overwhelming. You feel undeserving and like it is a mistake. Knowing that we don't need to worry about finances for Gavyn is liberating. Knowing that we will be able to do extra therapies for him and other extra things is exciting. You always want to do the best for your kids but sometimes you simply can't do all you want, I feel like now we are being freed up to do that much more. It's exciting to not have to worry about the future for him and us.
Tuesday, August 20, 2013
Eye Sight
When Gavyn had his neuro surgery last October he recovered well but two days after his surgery his eyes crossed. It caused quite the scare in our house, after neuro surgery a big warning sign that something is wrong is eye sight. We had to rush him back to Glennon, have a CT done and see his surgeon. Thankfully he was OK, unfortunately his eye sight has been greatly impacted since. Slowly they have been un-crossing and for the last couple months we have been doing eye drops every night to help them further. Next month we see his eye doctor again and see if Gavyn needs to have eye surgery to fix the problem completely or if the eye drops will ultimately fix it. Talk about a slow painful process - almost a year! I had almost forgotten how much progress his eyes had made until I was looking at pictures, this is him in February:
Look at how terrible that left eye is! This is him now:
Woah! Keep our fingers crossed for no surgery!
Growing like a tree....
Gavyn has been on growth hormones for about 3 months and the boy has grown 2 inches, went from a size 6 1/2 to a 7 1/2 shoe, changed shirt size from 2T to 3T and pant size from 18 month to 2T. It has been crazy. I say growing like a tree because it will slow slightly and he's getting stronger not just taller like a weed. I've been pretty faithful about taking a picture on Mondays but have missed a few. Here is what I have in order!
isn't it crazy how much his face changed from a baby to a preschooler? Happened over night.
isn't it crazy how much his face changed from a baby to a preschooler? Happened over night.
Hold onto your butts people....
That's a common phrase in our household, I'm not sure where it came from. Months ago (maybe longer) I started saying it - a lot. It has caught on with the kids and Ryan, it is used mostly in the car but occasionally other times. I say it now because there is much to catch up on people....
As you may remember Nevin was scheduled to have surgery on June 6th and in a strange turn of events surgery was canceled and we found ourselves in the hands of another surgeon all together. We fell in love with Dr. Lin and were so grateful to be with his team, I wish we would have had him the whole time but, the important thing is that Nevin got him and he's fabulous. We were bummed that surgery would not happen before July and Nevin would be on a very restricted diet for 6 weeks which could possibly ousts our vacation plans to Texas. We patiently waited for a phone call to schedule surgery. On Friday June 15 I took Nevin to Cardinal Glennon to have his cast removed (did I blog that yet?) and as we were pulling back into our driveway my phone rang, it was Cardinal Glennon (this is becoming an eerie trend). I answered and was shocked when the secretary said, 'Dr. Lin had a cancellation and wants to fit Nevin in on Monday, can you do that?'
"This Monday? Like three days from now Monday?"
"Yes ma'am. Would that work?"
"absolutely!"
Talk about perfect timing. Not only did his surgery date only get pushed out 11 days from his original date, he would finish his restricted diet the day we arrived in Texas. We were beyond excited and overwhelmed. There was no time to dwell and worry just time to get ready for surgery!
The surgery itself was long. Before surgery even started we had to wait an additional 2 hours, that made our wait time a little over 4 hours. Our nurse told us Dr. Lin is a perfectionist and almost all his surgeries go late because he treats every child as his own and won't stop until the procedure is perfect. Ok, I could wait for that. Nevin did great waiting, we watched a lot of Scooby Do. Once he was back in surgery they took us to a private waiting room that was so great. My parents brought the other boys up for dinner and we sat in peace with them trying not to worry too much. His surgery lasted for over 4 hours. I was nervous but ok, I knew he was in the best of hands. When surgery was out and we saw Dr. Lin and Dr. Roe they were very pleased with how things went. They were able to tighten the muscles in the back of his throat, lengthen his soft palate and when they got into his mouth they were able to see he did indeed have a submoucus cleft palate which they were able to close.
Side bar....
I'm not usually one to worry about being justified but the moment Dr. Lin said he did have a submucous cleft... I have never felt so justified in my entire life. I had known in my gut before Nevin was born that there was something wrong with his palate. For three years I didn't know what, I just knew something was wrong, when he was 2 1/2 I found out what a submucous cleft was and for 3 years since I have been trying to convince all of our doctors that that is what he had. No one would believe me though because they couldn't see it. His speech therapists agreed with me and were a big support in my fight over it. How did I know? Prepare to feel one of two things (ok, maybe both), I am either a whack job or I had a divine revealing before he was born.
About two months before Nevin was born I had a strange dream. In the dream I gave birth to Nevin and before I could see him the nurse took him away from me to another room. Frustrated I went searching for him all over the hospital (which was odd because we were planning and did have a homebirth with him). I finally found the nurse who had him but her back was turned to me, when she turned around she was holding Nevin and she was pulling his teeth out, he had a cleft palate and did not look like a normal baby. I grabbed him away from her, held him and just cried, telling myself how much I loved him.
Now, the stranger part of all this is not just the dream but what I feel was a revealing of our life. Nevin has felt like a puzzle to us and we have searched so many doctors at Glennon trying to find the missing piece that would put him together for us - Me searching in the dream. We took Nevin to the dentist at Glennon who had to do major dental surgery on him and was the one who referred us to the cleft team. Dr. Veraldi was the first one to take me seriously - The pulling his teeth. Finding out he did have a cleft from Dr. Lin - obvious with the dream. And Dr. Braddock finding he had 22q deletion - me crying over him being different but knowing I loved him anyway.
Close the side bar....
Nevin did fabulous after surgery. The poor thing looked terrible and felt terrible but did so well. We had a nice surprise, one of his classmates mom is a nurse at Glennon and works on the floor we stayed at. Her two boys had cleft palates and Dr, Lin was their surgeon as well. It was nice to have a familiar face around. We stayed at Glennon for 3 days and nervously but optimistically came home. By the following Monday Nevin was back to his normal self, almost! His speech has continued to improve, it is still going to be a lot of work though. He is such a trooper and working so hard.
As you may remember Nevin was scheduled to have surgery on June 6th and in a strange turn of events surgery was canceled and we found ourselves in the hands of another surgeon all together. We fell in love with Dr. Lin and were so grateful to be with his team, I wish we would have had him the whole time but, the important thing is that Nevin got him and he's fabulous. We were bummed that surgery would not happen before July and Nevin would be on a very restricted diet for 6 weeks which could possibly ousts our vacation plans to Texas. We patiently waited for a phone call to schedule surgery. On Friday June 15 I took Nevin to Cardinal Glennon to have his cast removed (did I blog that yet?) and as we were pulling back into our driveway my phone rang, it was Cardinal Glennon (this is becoming an eerie trend). I answered and was shocked when the secretary said, 'Dr. Lin had a cancellation and wants to fit Nevin in on Monday, can you do that?'
"This Monday? Like three days from now Monday?"
"Yes ma'am. Would that work?"
"absolutely!"
Talk about perfect timing. Not only did his surgery date only get pushed out 11 days from his original date, he would finish his restricted diet the day we arrived in Texas. We were beyond excited and overwhelmed. There was no time to dwell and worry just time to get ready for surgery!
The surgery itself was long. Before surgery even started we had to wait an additional 2 hours, that made our wait time a little over 4 hours. Our nurse told us Dr. Lin is a perfectionist and almost all his surgeries go late because he treats every child as his own and won't stop until the procedure is perfect. Ok, I could wait for that. Nevin did great waiting, we watched a lot of Scooby Do. Once he was back in surgery they took us to a private waiting room that was so great. My parents brought the other boys up for dinner and we sat in peace with them trying not to worry too much. His surgery lasted for over 4 hours. I was nervous but ok, I knew he was in the best of hands. When surgery was out and we saw Dr. Lin and Dr. Roe they were very pleased with how things went. They were able to tighten the muscles in the back of his throat, lengthen his soft palate and when they got into his mouth they were able to see he did indeed have a submoucus cleft palate which they were able to close.
Side bar....
I'm not usually one to worry about being justified but the moment Dr. Lin said he did have a submucous cleft... I have never felt so justified in my entire life. I had known in my gut before Nevin was born that there was something wrong with his palate. For three years I didn't know what, I just knew something was wrong, when he was 2 1/2 I found out what a submucous cleft was and for 3 years since I have been trying to convince all of our doctors that that is what he had. No one would believe me though because they couldn't see it. His speech therapists agreed with me and were a big support in my fight over it. How did I know? Prepare to feel one of two things (ok, maybe both), I am either a whack job or I had a divine revealing before he was born.
About two months before Nevin was born I had a strange dream. In the dream I gave birth to Nevin and before I could see him the nurse took him away from me to another room. Frustrated I went searching for him all over the hospital (which was odd because we were planning and did have a homebirth with him). I finally found the nurse who had him but her back was turned to me, when she turned around she was holding Nevin and she was pulling his teeth out, he had a cleft palate and did not look like a normal baby. I grabbed him away from her, held him and just cried, telling myself how much I loved him.
Now, the stranger part of all this is not just the dream but what I feel was a revealing of our life. Nevin has felt like a puzzle to us and we have searched so many doctors at Glennon trying to find the missing piece that would put him together for us - Me searching in the dream. We took Nevin to the dentist at Glennon who had to do major dental surgery on him and was the one who referred us to the cleft team. Dr. Veraldi was the first one to take me seriously - The pulling his teeth. Finding out he did have a cleft from Dr. Lin - obvious with the dream. And Dr. Braddock finding he had 22q deletion - me crying over him being different but knowing I loved him anyway.
Close the side bar....
Nevin did fabulous after surgery. The poor thing looked terrible and felt terrible but did so well. We had a nice surprise, one of his classmates mom is a nurse at Glennon and works on the floor we stayed at. Her two boys had cleft palates and Dr, Lin was their surgeon as well. It was nice to have a familiar face around. We stayed at Glennon for 3 days and nervously but optimistically came home. By the following Monday Nevin was back to his normal self, almost! His speech has continued to improve, it is still going to be a lot of work though. He is such a trooper and working so hard.
Thursday, June 6, 2013
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.
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.
"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.
Wednesday, May 29, 2013
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.
Tuesday, May 28, 2013
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!"
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!"
Friday, April 26, 2013
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.
Tuesday, April 23, 2013
Much to tell
Lack of blogging is brought to you by overly busy momma! We have had so many things going on this month and I'm trying to keep my head above water. I will give a run down on what's happened this month...
Some of the most exciting news came for Nevin and I already shared it. He is having cleft palette surgery in June! His soft palette is not formed correctly and after much speech therapy, ENT testing and discussion it has been determined that he is a good candidate for surgery to lengthen his palette and help him to get better closer when he speaks. This should close off the air movement from all going through his nose and help his speech to not sound all nasal. We are super excited!
Nevin also had an echo of his heart and ultrasound of his kidneys which came back normal. Kids with 22q deletion tend to have issues with both of those and we are relieved that his were normal!
We visited Nevin's new kindergarten and had his testing done. He is kindergarten ready! The last month he has grown and matured an incredible amount and I am feeling more and more confident with him starting the new school come fall.
Gavyn started seeing Nevin's endocrinologist this month and we are in the processes of checking his growth hormone levels. Hopefully insurance will approve our request quickly and we can get started! I am not looking forward to giving my baby a shot every day but I am excited for him to begin to grow again and hopefully have stronger muscles.
Gav also began PT at PSKids with our great therapists Kelly who has worked with Nevin for 3 years now. He loves going and works really hard. He goes while Nevin gets OT and its hilarious to hear them playing and yelling at each other during their time.
Both boys had their eyes checked and Nevin got "new" glasses. They look the exact same but new prescription, we don't like change much. ;) Gav will most likely have eye surgery to correct the crossing that happened back in October after his shunt surgery. Dr. Cruz will see him and check his eyes in June and we will go from there.
And the biggest news this month is that Ryan got a new full time job! He has been freelancing for 4 years and obviously this will be a huge change for our family! We are super excited. He will be in the media communication department at First E Free Church in West County. We will need to attend church there which will be another big change. We have attended our home church for almost 8 years and my parents attend as well. It is sad to leave but we are ready for our new mission.
And that's what's happened in the last 3 weeks!
Some of the most exciting news came for Nevin and I already shared it. He is having cleft palette surgery in June! His soft palette is not formed correctly and after much speech therapy, ENT testing and discussion it has been determined that he is a good candidate for surgery to lengthen his palette and help him to get better closer when he speaks. This should close off the air movement from all going through his nose and help his speech to not sound all nasal. We are super excited!
Nevin also had an echo of his heart and ultrasound of his kidneys which came back normal. Kids with 22q deletion tend to have issues with both of those and we are relieved that his were normal!
We visited Nevin's new kindergarten and had his testing done. He is kindergarten ready! The last month he has grown and matured an incredible amount and I am feeling more and more confident with him starting the new school come fall.
Gavyn started seeing Nevin's endocrinologist this month and we are in the processes of checking his growth hormone levels. Hopefully insurance will approve our request quickly and we can get started! I am not looking forward to giving my baby a shot every day but I am excited for him to begin to grow again and hopefully have stronger muscles.
Gav also began PT at PSKids with our great therapists Kelly who has worked with Nevin for 3 years now. He loves going and works really hard. He goes while Nevin gets OT and its hilarious to hear them playing and yelling at each other during their time.
Both boys had their eyes checked and Nevin got "new" glasses. They look the exact same but new prescription, we don't like change much. ;) Gav will most likely have eye surgery to correct the crossing that happened back in October after his shunt surgery. Dr. Cruz will see him and check his eyes in June and we will go from there.
And the biggest news this month is that Ryan got a new full time job! He has been freelancing for 4 years and obviously this will be a huge change for our family! We are super excited. He will be in the media communication department at First E Free Church in West County. We will need to attend church there which will be another big change. We have attended our home church for almost 8 years and my parents attend as well. It is sad to leave but we are ready for our new mission.
And that's what's happened in the last 3 weeks!
Wednesday, April 10, 2013
Sharing!
I wrote this on my other blog and thought heck, link it up over here!
Home Birth
http://pailssnailsnpuppydogtails.blogspot.com/2013/04/home-birth.html
Home Birth
http://pailssnailsnpuppydogtails.blogspot.com/2013/04/home-birth.html
Thursday, April 4, 2013
Super news for a super kid!
It only took three years, 7 speech therapists, two pediatricians, one dentist and dental surgery, practically blood, sweat and tears but we finally got the answer we were waiting for. Nevin does, in fact, have a palette issue that can be fixed with surgery! Woohoo!!! I was jumping up and down while I was on the phone with Deb, our cleft palate nurse. It was an amazing moment long! Long hoped and prayed for! It won't be a quick fix and speech therapy will still be a part of our life but, we will be able to understand him so much better! We are super excited! :)
Friday, March 29, 2013
Good News
I was a good mom and not a crazy mom. I waited patiently for 3 weeks 6 days to hear back about Gavyn's genetic testing but did not hear from our counselor and they tell you it will take 2-4 weeks. I called on Monday morning and left her a message asking if they had the results because it would be four weeks the next day. She called me back late in the afternoon with some very good news. Gavyn does not have 22q Deletion like Nevin and he does not have any other genetic issues! Praise God! I was so excited and so relieved. It was a flood of emotions. Realizing it is not something Ryan or I am passing on. The other boys don't need to be tested. They should all be able to grow up and have families without extra worry of passing anything on to their kids. It was a great feeling. Next Friday we see Dr.Myers about his growth and hopefully we can find more answers to that question but in the mean time I am going to bask in the glow of my gratefulness that he does not have another diagnosis.
Tuesday, March 26, 2013
First Steps
Gavyn and his BFF Jenny our OT
Gavyn and his super fun ST Jill - seriously, you see that goofy smile? He loved Jill
A during shot! Woah
And a seriously sad face for Jenny. The joke is that Jenny can make my kids cry like no other. The day that stands in Stanley family history is the day Jenny made all three of my kids cry and she never even worked with Skyler. She thought my hubby hated her but he really didn't. We love you Jenny!
Hopefully one day I will have a picture of Adele because she seriously helped Gavyn so much. She kept him and us motivated that he would do amazing things. She was so wonderful and we loved working with her. I also don't have a picture of our service coordinator Heather. She was just as awesome as our therapists. Anytime we needed something she was on top of it. Not only was she easy to work with but we really became friends over those three years and hopefully we will keep in touch with her as well. I have nothing but good things to say about First Steps and everything they did for both boys. I can not believe it has been three years and that we had to say goodbye. Thankfully not for forever, we will totally keep in touch! We will all miss them. Your therapists see you through the worst and best and become your second family. I don't know what I would have done without those 4 amazing women. Thanks ladies!!
Tuesday, March 19, 2013
Nothing Much
We are still in waiting mode around here. I'm anxious to hear what the cleft palette team will say about Nevin next month, hopefully we will hear early in the week. I pray that surgery is an option for him and that we can do it this Spring, have healing and speech therapy this Summer, and start Kindergarten with a bang. I have to keep up that hope for a few more weeks. And we are still waiting to hear from genetics about Gavyn. Back in December when we saw our Neuro Surgeon I had asked the nurse practitioner about Gavyn's growth and if the hydrocephalus had attributed to his slow/non-existent growth, she said that those don't go hand in hand but I should ask Dr. Elbabaa about it. For whatever reason when he came in I forgot to ask him, I am sure we got on some other tangent. Well, we went back last Tuesday and I remembered to ask him. His thought was that we need to see an endocrinologists (which we are seeing Nevin's Dr. Myers for Gav in April) but, he had meningitis and we know there is a lot of scarring on his brain and that could have in fact scarred his pituitary gland and affected his growth. Between that statement and after chatting with Dr. Braddock about the genetic testing I am starting to believe that Gavyn doesn't have a genetic disorder on top of his hydrocephalus. Perhaps his illness has scarred him and affected him in ways we are yet to see, like growth, and who knows what else? Although I hate to see my boys be so small and I pray that teasing/bullying is never an issue for them, there are far worse things in the world than being on the small side. I suppose in a few days (maybe today!) I will have a more concrete answer for Gav, in the meantime I wait.
Friday, March 8, 2013
What people don't understand
This post is going to be something I have not really done before. I started writing this post last Saturday and was extremely frustrated/mad and then in the middle of blogging my iPad died and lost more than half of my writing. That made me more mad but, now I'm glad. I have had time to think more about this issue and calm down from the initial frustration. Here goes...
Last Saturday I was early to my counseling session and decided to meander around Facebook. I opened it up on my phone and this imagine was starring me in the face.
The person who posted it is someone who I love dearly and I think I have a good relationship with. I was not the only person who commented on it and shared how offensive this is to every parent that has a special needs kid. The person who posted it apologized and took the photo down and in their defense I know this person did not mean to hurt anyone and I think it was a post that was not well thought out. That being said, this was a post that I felt needed to be addressed and that I could not just be silent on.
There are so many amazing things about the world we live in now compared to 10, 20 and good lord, 50 years ago, for parents and the kids with special needs. We used to hide these kids away, put them in institutions and there was no real help for them. I am so thankful for the world my kids live in and that they can go to school with their peers, get therapy to help them, have the world include them. It is awesome for them and for our family. I don't need to be ashamed of them and keep them hidden in my home. And yet, with all the advancements in the education system, the health care industry, people learning to be inclusive we still battle things like this graphic posted on Facebook. Every parent of special needs kids knows this and we all know that it is a battle and I am not exaggerating when I use that language. We battle bullies in the classroom, both peers and teachers, we battle with family who don't agree with our methods, we battle insurance agencies and hospitals and then we battle people who believe things like this picture.
Behavioral Disorders are not something to laugh at and not something that anyone should pretend is a label any parent would use instead of calling their child spoiled. I have sat with multiple friends who's kiddos have behavioral disorders and heard the stories of family or friends who tell them that they caused these problems for the kids. That is ridiculous and heart breaking. People do not cause children to have Autism, Childhood Schizophrenia, Bipolar or any other mental illness. No one caused that. These parents are loving, caring parents who are taking the time, money and resources they can to better their childs life with more therapy, better education and a list of specialists out the wazoo. When their child is at Target and has trouble processing the world and everything going on around them and they melt down in a "temper tantrum" and mom and dad need to try and be calm as they take them out of the store, they do not want everyone watching them and judging them and saying, "In my day we called your kid a brat." These children are not brats. My kids are not brats. My friends kids are not brats. They are children made in the image of God and they happen to process the world differently than you and I. If that is a problem for you than that is just what it is. A problem for you. There are many things in the world that are different outside of our own little circle and they are things that might make us uncomfortable unless we educate ourselves on them. There is a real problem with how mental health is addressed and taken care of in our country and these kinds of posts don't help that at all. I don't think the outside world understands how hard it is in the Special Needs community to label your kids. It is easy for the outside world to throw a label on our kids or tell us we shouldn't use a label we use because "your kids aren't that messed up." (Yes, people have said that to me and I drop kick them, in my mind) It is very hard to say, "I have two special needs kids." The first few times I said that I died a little on the inside. I am not used to saying that Nevin has a genetic disorder either. It is painful. People think it is easy for us to say, "My child has a Behavioral Disorder." as if its a band-aid for their ill behavior, or our lack of parenting or whatever. That is a painful thing to say. You don't well up with pride when you are forced to say these things to people. It is personal, it is painful, it is all of your dreams first hoped for crushed in one tiny phrase. It is not an excuse and people should not think it is.
So, if you do or don't have an awesome family with special needs in your life but you hear someone say something ridiculous like this, please, correct them. Maybe they don't know, maybe they are ignorant of things around them. Maybe they do know and are just a bully. Either way, it doesn't matter and it is not an excuse for bad behavior. There are people who simply don't think before they speak. There are also a lot of people in the world who still need to learn how to be human and it takes a village to teach them.
Last Saturday I was early to my counseling session and decided to meander around Facebook. I opened it up on my phone and this imagine was starring me in the face.
The person who posted it is someone who I love dearly and I think I have a good relationship with. I was not the only person who commented on it and shared how offensive this is to every parent that has a special needs kid. The person who posted it apologized and took the photo down and in their defense I know this person did not mean to hurt anyone and I think it was a post that was not well thought out. That being said, this was a post that I felt needed to be addressed and that I could not just be silent on.
There are so many amazing things about the world we live in now compared to 10, 20 and good lord, 50 years ago, for parents and the kids with special needs. We used to hide these kids away, put them in institutions and there was no real help for them. I am so thankful for the world my kids live in and that they can go to school with their peers, get therapy to help them, have the world include them. It is awesome for them and for our family. I don't need to be ashamed of them and keep them hidden in my home. And yet, with all the advancements in the education system, the health care industry, people learning to be inclusive we still battle things like this graphic posted on Facebook. Every parent of special needs kids knows this and we all know that it is a battle and I am not exaggerating when I use that language. We battle bullies in the classroom, both peers and teachers, we battle with family who don't agree with our methods, we battle insurance agencies and hospitals and then we battle people who believe things like this picture.
Behavioral Disorders are not something to laugh at and not something that anyone should pretend is a label any parent would use instead of calling their child spoiled. I have sat with multiple friends who's kiddos have behavioral disorders and heard the stories of family or friends who tell them that they caused these problems for the kids. That is ridiculous and heart breaking. People do not cause children to have Autism, Childhood Schizophrenia, Bipolar or any other mental illness. No one caused that. These parents are loving, caring parents who are taking the time, money and resources they can to better their childs life with more therapy, better education and a list of specialists out the wazoo. When their child is at Target and has trouble processing the world and everything going on around them and they melt down in a "temper tantrum" and mom and dad need to try and be calm as they take them out of the store, they do not want everyone watching them and judging them and saying, "In my day we called your kid a brat." These children are not brats. My kids are not brats. My friends kids are not brats. They are children made in the image of God and they happen to process the world differently than you and I. If that is a problem for you than that is just what it is. A problem for you. There are many things in the world that are different outside of our own little circle and they are things that might make us uncomfortable unless we educate ourselves on them. There is a real problem with how mental health is addressed and taken care of in our country and these kinds of posts don't help that at all. I don't think the outside world understands how hard it is in the Special Needs community to label your kids. It is easy for the outside world to throw a label on our kids or tell us we shouldn't use a label we use because "your kids aren't that messed up." (Yes, people have said that to me and I drop kick them, in my mind) It is very hard to say, "I have two special needs kids." The first few times I said that I died a little on the inside. I am not used to saying that Nevin has a genetic disorder either. It is painful. People think it is easy for us to say, "My child has a Behavioral Disorder." as if its a band-aid for their ill behavior, or our lack of parenting or whatever. That is a painful thing to say. You don't well up with pride when you are forced to say these things to people. It is personal, it is painful, it is all of your dreams first hoped for crushed in one tiny phrase. It is not an excuse and people should not think it is.
So, if you do or don't have an awesome family with special needs in your life but you hear someone say something ridiculous like this, please, correct them. Maybe they don't know, maybe they are ignorant of things around them. Maybe they do know and are just a bully. Either way, it doesn't matter and it is not an excuse for bad behavior. There are people who simply don't think before they speak. There are also a lot of people in the world who still need to learn how to be human and it takes a village to teach them.
School
Gavyn started preschool the week after his bday, he goes Monday and Thursday in the morning. Can you believe it? It is crazy to me that he is in school but really awesome. It is so exciting that he can go to school, go to regular school, that he is in a typical classroom with typically developing kids. It is awesome that he should be keeping up academically with his peers and transition to Pre-K4 and Kindergarten with minimal or no issues at all. These are dreams hoped for and achieved. The first day of school he did very well walking in, going to his room, hanging up his coat, all with no tears until, he realized that I was not staying and then he wanted to go home and cried. I told Ms. Pam that as soon as I left I was sure he would be fine and sure enough, 5 minutes after I left he settled in and did great! The next school day he cried for 3 minutes and was fine and the last day I dropped him off he waved goodbye and said, "It's my school mom, I go to school!" Proudest mommy moment. All his teachers love him to death and want to cuddle him! The other kids love him (I'm sure they think he is a baby) and want to play with him. They have sent me videos and pictures and he is so proud sitting at the table and doing his work or participating in circle time. He knows he is a big guy and he is so excited about it. I love it. This is going to be a good year for him and he is going to grow so much at school. I am just really sad that Ms. Pam is retiring and won't be with him and us next year. She has been the best teacher, the best! I could not have asked for more.
Pictures
Nevin in the birthday boy hat at PS Kids on his Birthday
Gavyn on his birthday with his new Yoshi backpack
First day of school!!
Scope
I can't believe it has been a week since I blogged! This week went by too fast. Friday, Saturday and Sunday were full of so many fun things! We got to spend time with both of my brothers and their lovely ladies on different nights. Bonus, they brought dinner to us! They are all pretty great. :) Sunday we celebrated one of my favorite people's birthday eating Chinese Dim Sum and it was super yummy. Then all 6 of us crashed with stomach flu together in the middle of the night. Oh my... It sucked. Thankfully 12 hours later all the kids were fine, Ryan took about 24 hrs and of course I took longest. By Tuesday night the house was disinfected and we were back to normal life! But it's made this week weird and short.
The most amazing thing happened this week though. Tuesday Nevin saw the ENT nurse practitioner at Cardinal Glennon to have his soft palette scoped to see what is really going on with his mouth. We have been waiting for almost a year to do this procedure because he needed to have more vocabulary to accomplish what they needed to see to see if they can fix anything. We have been prepping him for a week with nasal spray and talking endlessly about seeing Loretta and putting a camera in his nose to see his boogers (come on, he's a boy!). I was terrified for the procedure and that if he threw a fit all data would be useless and we would need to do xRays of his mouth and that would not be good or as helpful. When we arrived we had the nicest nurse come in and chat with us. First they needed to put spray in his nose and have him swallow it to numb the area. She let him spray the bottle a few times to see that it wasn't scary, we talked about how it would taste like tooth paste and how much he loves tooth paste (he really does, he would just eat a tube of it if I was stupid enough to let him), that it would feel just like the nasal spray at home. One, two, three, ready or not here comes the spray! Amazing. No tears, no fighting, he took it like a man. We gave him 5 minutes to get over any kind of attitude and then Loretta came in with lots of presents and suckers that he could only have if he was good and said all the things she asked him to say. He climbed up into the nurses lap, let the ENT put the camera in his nose and he intently watched the TV screen of his nose and palette and was totally intrigued by watching everything in his mouth move! It was insane how good he was. I mean, if someone stuck a camera up your nose you would probably want to punch them, right? He just understand what was going on and that he really wanted that red sucker. We finally got an awesome picture of how his soft palette moves or lack of movement and closure. I feel justified. For years I have said something was wrong and have been told by multiple doctors that nothing was wrong he just needed more speech therapy. Well, there is something wrong! His palette does not do what it is supposed to do and now we know what we are working with. We need to wait for the surgeon to review the data and determine what our next step is. We might need to do more speech therapy and review in 6 months or more. I am hopeful that he will be a good candidate for surgery to repair his palette so that it can achieve the closure that it needs for him to make the proper sounds and not sound like he talks out of his nose. We are so much closer than we have ever been and I'm so thankful for that. We need some good news for this sweet boy who works so hard to be understood and heard.
The most amazing thing happened this week though. Tuesday Nevin saw the ENT nurse practitioner at Cardinal Glennon to have his soft palette scoped to see what is really going on with his mouth. We have been waiting for almost a year to do this procedure because he needed to have more vocabulary to accomplish what they needed to see to see if they can fix anything. We have been prepping him for a week with nasal spray and talking endlessly about seeing Loretta and putting a camera in his nose to see his boogers (come on, he's a boy!). I was terrified for the procedure and that if he threw a fit all data would be useless and we would need to do xRays of his mouth and that would not be good or as helpful. When we arrived we had the nicest nurse come in and chat with us. First they needed to put spray in his nose and have him swallow it to numb the area. She let him spray the bottle a few times to see that it wasn't scary, we talked about how it would taste like tooth paste and how much he loves tooth paste (he really does, he would just eat a tube of it if I was stupid enough to let him), that it would feel just like the nasal spray at home. One, two, three, ready or not here comes the spray! Amazing. No tears, no fighting, he took it like a man. We gave him 5 minutes to get over any kind of attitude and then Loretta came in with lots of presents and suckers that he could only have if he was good and said all the things she asked him to say. He climbed up into the nurses lap, let the ENT put the camera in his nose and he intently watched the TV screen of his nose and palette and was totally intrigued by watching everything in his mouth move! It was insane how good he was. I mean, if someone stuck a camera up your nose you would probably want to punch them, right? He just understand what was going on and that he really wanted that red sucker. We finally got an awesome picture of how his soft palette moves or lack of movement and closure. I feel justified. For years I have said something was wrong and have been told by multiple doctors that nothing was wrong he just needed more speech therapy. Well, there is something wrong! His palette does not do what it is supposed to do and now we know what we are working with. We need to wait for the surgeon to review the data and determine what our next step is. We might need to do more speech therapy and review in 6 months or more. I am hopeful that he will be a good candidate for surgery to repair his palette so that it can achieve the closure that it needs for him to make the proper sounds and not sound like he talks out of his nose. We are so much closer than we have ever been and I'm so thankful for that. We need some good news for this sweet boy who works so hard to be understood and heard.
Thursday, February 28, 2013
Process
The other great benefit of getting up at 4:30am to go workout is that I am home by 6:15 and the kids are either still asleep or just want to sit in front of the TV and watch cartoons. We don't have to start getting dressed and eating breakfast until 7 which means I have plenty of time to drink coffee and have devotions. Last week I wanted to pick a book of the Bible to work thru that was not the same as our Community Group. I was thinking about the suffering forum I had gone to at church and going over some notes from that at the same time and I decided Job would be a fitting book to read thru. I thought I might need something up-lifting as well and decided to read the Psalms as well. I have been reading one chapter from each book and reading My Utmost for His Highest by Oswald Chambers. I have been reading this devotional for years now and I can't imagine not reading it. There are always new nuggets I pull out. Today I read Feb. 28th and I also read Feb 29th for the heck of it. Here is the 29th's...
"Lord, that I may receive my sight." Luke 18:41
What is the thing that not only disturbs you but makes you a disturbance? It is always some thing you cannotdeal
with yourself. "They rebuked him that he should hold his peace . . .
but he cried so much the more." Persist in the disturbance until you get
face to face with the Lord Himself; do not deify common sense. When
Jesus asks us what we want Him to do for us in regard to the incredible
thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways.
Watch how we limit the Lord by remembering what we have allowed Him to do for us in the past: I always failed there, and I always shall; consequently we do not ask for what we want. "It is ridiculous to ask God to do this." If it is an impossibility, it is the thing we have to ask. If it is not an impossible thing, it is not a real disturbance. God will do the absolutely impossible.
This man received his sight. The most impossible thing to you is that you should be so identified with the Lord that there is nothing of the old life left. He will do it if you ask Him. But you have to come to the place where you believe Him to be Almighty. Faith is not in what Jesus says but in Himself; if we only look at what He says we shall never believe. When once we see Jesus, He does the impossible thing as naturally as breathing. Our agony comes through the wilful stupidity of our own heart. We won't believe, we won't cut the shore line, we prefer to worry on.
Today was the first time that I had this thought... Ever since Gavyn got sick and was in the hospital, and ever since we realized Nevin was not going to be able to talk like a typical kid, I have had nights where I can not sleep. I lie awake in bed and stare out the window into the blackness. I cry, I sob, I pray, I beg. I want God to do a miracle and heal them. To take away Gavyn's hydrocephalus. To strength and heal his legs so he can run and play. For both of them to grow. For Nevin's mouth to "be opened" and for speech to spill out that is intelligible. These nights have become less frequent but I felt they would always be there. Until this morning after I read that.
"When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways."
What if the "incredible" thing that I need to ask God for is not healing for my kids but healing for me. To be free from the immense amount of shame and guilt I have. To not blame myself for Gavyn getting sick. To not feel guilt over Nevin being diagnosed at 3yrs and 5yrs old with his conditions. I can not imagine a life feeling free from that. I have had two of the boys doctors tell me to not feel this way. Dr. Werner from the PICU who told us Gavyn had hydrocephalus and Dr. Braddock our genetics doctor. Dr.Werner was an amazing doctor who told me some very powerful things that I still think on. Dr. Braddock completely caught me off guard on Tuesday when he brought up the guilt thing. He joked it was a mom gene that you can't get rid of but that I need to stop beating myself up. That none of this was my fault. I didn't know how to respond but I have been thinking about it. Today reading this gave me new insight. Healing. God is in the business of healing, I have seen it so much in our lives. Is it my turn now? Perhaps. I am not sure how to ask though....
"Lord, that I may receive my sight." Luke 18:41
What is the thing that not only disturbs you but makes you a disturbance? It is always some thing you cannot
Watch how we limit the Lord by remembering what we have allowed Him to do for us in the past: I always failed there, and I always shall; consequently we do not ask for what we want. "It is ridiculous to ask God to do this." If it is an impossibility, it is the thing we have to ask. If it is not an impossible thing, it is not a real disturbance. God will do the absolutely impossible.
This man received his sight. The most impossible thing to you is that you should be so identified with the Lord that there is nothing of the old life left. He will do it if you ask Him. But you have to come to the place where you believe Him to be Almighty. Faith is not in what Jesus says but in Himself; if we only look at what He says we shall never believe. When once we see Jesus, He does the impossible thing as naturally as breathing. Our agony comes through the wilful stupidity of our own heart. We won't believe, we won't cut the shore line, we prefer to worry on.
Today was the first time that I had this thought... Ever since Gavyn got sick and was in the hospital, and ever since we realized Nevin was not going to be able to talk like a typical kid, I have had nights where I can not sleep. I lie awake in bed and stare out the window into the blackness. I cry, I sob, I pray, I beg. I want God to do a miracle and heal them. To take away Gavyn's hydrocephalus. To strength and heal his legs so he can run and play. For both of them to grow. For Nevin's mouth to "be opened" and for speech to spill out that is intelligible. These nights have become less frequent but I felt they would always be there. Until this morning after I read that.
"When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways."
What if the "incredible" thing that I need to ask God for is not healing for my kids but healing for me. To be free from the immense amount of shame and guilt I have. To not blame myself for Gavyn getting sick. To not feel guilt over Nevin being diagnosed at 3yrs and 5yrs old with his conditions. I can not imagine a life feeling free from that. I have had two of the boys doctors tell me to not feel this way. Dr. Werner from the PICU who told us Gavyn had hydrocephalus and Dr. Braddock our genetics doctor. Dr.Werner was an amazing doctor who told me some very powerful things that I still think on. Dr. Braddock completely caught me off guard on Tuesday when he brought up the guilt thing. He joked it was a mom gene that you can't get rid of but that I need to stop beating myself up. That none of this was my fault. I didn't know how to respond but I have been thinking about it. Today reading this gave me new insight. Healing. God is in the business of healing, I have seen it so much in our lives. Is it my turn now? Perhaps. I am not sure how to ask though....
Normal Kids
We found out about Nevin's diagnosis 22 days ago and it has been a roller coaster of emotions since. This week we met with our newest doctor, Dr. Braddock of genetics, to go over our new diagnosis and also have testing done on Gavyn. Since finding out about Nevin's diagnosis we have been in and out of our peds office and one of our many visits was Gavyn's yearly check up. Oh my... It was a crazy day but the craziest thing was his growth. The kid grew less - LESS than an inch in an entire year. Growth problem? Ya think! I kid you not he is the size of an 18 month old. Something is amiss. Our ped wrote up the order for blood work and we went right over to Children's Hospital and had it drawn. Shockingly his thyroid levels were fine along with everything else, he is just low on Iron, bought the Flintstones and we are good to go. I have a call into Nevin's endocrinologist to set up an appt for Gav. In the meantime we saw Dr. Braddock and he didn't seem to be of the persuasion that Gav has 22q Deletion but there could be something with genetics. We are testing him and waiting our 2-4 weeks to hear results. *sigh*
It feels so strange to write all of that and have this resounding thought in the back of my head. They Are Normal Kids. They really, really are. Every kiddo has quirks, strengths and weaknesses, as parents we try our best to set them up to be successful in life. I don't treat Skyler different than I treat Nevin (just modified for age). Nevin and Gavyn happen to be the two strongest people I know and they are kids, teeny tiny kids by the way. Yet, they have already over come so many obstacles and endured so many trials, more than some people will ever face in a life time. Take walking for instance... When you have a baby you don't normally think, I hope they walk one day. You usually think things like, Oh man, when they walk I'll go crazy! When both of them were born I never thought they would not walk but as they progressed it was a thought, would they? Would they not? Nevin walked at 18 months and it was a struggle for him. At the time we still did not know there was any kind of issue, he just seemed more laid back than his hyperactive brother. But looking back, knowing what I know now, it was a struggle for him and he never gave up. Gavyn we knew at infancy that walking might be out of the question and he could be in a wheelchair. When that kid finally started to crawl I had hope. He army crawled for a long time and he would drag his body all over the house and up the stairs. Up the stairs people! Can you imagine doing an army crawl up a flight of stairs? Try it sometime, it ain't easy and he would do it over and over and over again. The day he took a step felt like more joy than the entire world could ever contain. Yes, they are my hero's and they are normal kids. They love to laugh, make jokes, sing songs, watch cartoons, harass their brothers, give hugs, get scared of the dark and would rather go to grandma's house than anywhere else in the world. They are normal kids. Normal kids with incredible strength and I love them. I'm so proud they are mine.
It feels so strange to write all of that and have this resounding thought in the back of my head. They Are Normal Kids. They really, really are. Every kiddo has quirks, strengths and weaknesses, as parents we try our best to set them up to be successful in life. I don't treat Skyler different than I treat Nevin (just modified for age). Nevin and Gavyn happen to be the two strongest people I know and they are kids, teeny tiny kids by the way. Yet, they have already over come so many obstacles and endured so many trials, more than some people will ever face in a life time. Take walking for instance... When you have a baby you don't normally think, I hope they walk one day. You usually think things like, Oh man, when they walk I'll go crazy! When both of them were born I never thought they would not walk but as they progressed it was a thought, would they? Would they not? Nevin walked at 18 months and it was a struggle for him. At the time we still did not know there was any kind of issue, he just seemed more laid back than his hyperactive brother. But looking back, knowing what I know now, it was a struggle for him and he never gave up. Gavyn we knew at infancy that walking might be out of the question and he could be in a wheelchair. When that kid finally started to crawl I had hope. He army crawled for a long time and he would drag his body all over the house and up the stairs. Up the stairs people! Can you imagine doing an army crawl up a flight of stairs? Try it sometime, it ain't easy and he would do it over and over and over again. The day he took a step felt like more joy than the entire world could ever contain. Yes, they are my hero's and they are normal kids. They love to laugh, make jokes, sing songs, watch cartoons, harass their brothers, give hugs, get scared of the dark and would rather go to grandma's house than anywhere else in the world. They are normal kids. Normal kids with incredible strength and I love them. I'm so proud they are mine.
Wednesday, February 13, 2013
Tenth Avenue North - Worn
I’m Tired I’m worn My heart is heavy From the work it takes to keep on breathing I’ve made mistakes I’ve let my hope fail My soul feels crushed by the weight of this world And I know that you can give me rest So I cry out with all that I have left
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn
I know I need to lift my eyes up But im too weak Life just won’t let up And I know that you can give me rest So I cry out with all that I have left
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn My prayers are wearing thin And I’m worn Even before the day begins I’m worn I’ve lost my will to fight I’m worn Heaven come and flood my eyes
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause all that’s dead inside will be reborn
Though I’m worn Yeah I’m worn
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn
I know I need to lift my eyes up But im too weak Life just won’t let up And I know that you can give me rest So I cry out with all that I have left
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn My prayers are wearing thin And I’m worn Even before the day begins I’m worn I’ve lost my will to fight I’m worn Heaven come and flood my eyes
Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause all that’s dead inside will be reborn
Though I’m worn Yeah I’m worn
Savior Please - Josh Wilson
Savior please take my hand I work so hard, I live so fast This life begins and then it ends And I do the best that I can But I don't know how long I'll last
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me
Savior please help me stand I fall so hard, I fade so fast Will You begin right where I end And be the God of all I am because You're all that I have
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me
(Hallelujah) Everything You are to me (Hallelujah) Is everything I'll ever need (Hallelujah) And I am learning to believe (Hallelujah) That I don't have to prove a thing (Hallelujah) 'Cause You're the one who's saving me Hallelujah
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me, Savior please keep saving me
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me
Savior please help me stand I fall so hard, I fade so fast Will You begin right where I end And be the God of all I am because You're all that I have
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me
(Hallelujah) Everything You are to me (Hallelujah) Is everything I'll ever need (Hallelujah) And I am learning to believe (Hallelujah) That I don't have to prove a thing (Hallelujah) 'Cause You're the one who's saving me Hallelujah
I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me, Savior please keep saving me
Tuesday, February 12, 2013
Empty
I have been desperately wanting to blog since the news last week but I haven't found the time. As I said, we received the news that Nevin has 22q deletion on his birthday (last Wednesday) and his and Gavyn's combined party was on Sunday. I think the party is what got me thru those first few days. Wednesday was rough but Thursday was better, Friday I was mad, really mad, Saturday I was occupied with party prep until church. Church... That was hard.
Now I can't remember what songs we sang but I do remember having this thought:
You (God) hold everything together. You formed my babies in my womb. You made them how you wanted them to be and you chose to leave off a tiny piece of Nevin's genetic makeup - possibly Gavyn as well. Why? Why would You do that? How does this bring you glory? How much simpler my life, their lives would be if You hadn't done that.
I wasn't mad though. I've been more angry at other people and not so much God during all this. I just have so many thoughts in my head and heart. I'm full of questions and feel completely empty. Empty. I've never felt this empty before. It's like someone kicked me in the chest, knocking the wind out of me and I haven't caught my breath yet.
I suppose answers come slowly and time will heal some hurt.
Now I can't remember what songs we sang but I do remember having this thought:
You (God) hold everything together. You formed my babies in my womb. You made them how you wanted them to be and you chose to leave off a tiny piece of Nevin's genetic makeup - possibly Gavyn as well. Why? Why would You do that? How does this bring you glory? How much simpler my life, their lives would be if You hadn't done that.
I wasn't mad though. I've been more angry at other people and not so much God during all this. I just have so many thoughts in my head and heart. I'm full of questions and feel completely empty. Empty. I've never felt this empty before. It's like someone kicked me in the chest, knocking the wind out of me and I haven't caught my breath yet.
I suppose answers come slowly and time will heal some hurt.
Friday, February 8, 2013
Happy birthday, here's your genetic diagnosis
I thought I would have lots of insightful things to say when we heard back from genetics but, I don't. Of all days to call they actually called on Nevin's birthday. Really? It kind of pissed me off. Happy birthday, you have 22Q Deletion. That's right, we have a diagnosis and it completely caught me off guard. I had really convinced myself that there was nothing wrong with his genetics and it was a waste of his blood so to speak. I was wrong. Not only did they find he has 22Q Deletion, but that is the very thing suspected by a grandma, who happened to be a nurse, who walked passed us at Glennon on our way to the cleft palette team. Her grandson also had it. Strange, huh? I don't know if there is a stranger feeling in the world, talking to a doctor or in this case a counselor about how your kid has this thing wrong with them that they will have the rest of their lives. How it all happened by chance and it's not because I'm a bad mom, it just happened... by chance. Thanks for saying that, again, and again. It really doesn't lessen the blow, I'm not sure they know that. It just makes you really mad, at everything, it reminds you just how unfair the world really is. Yes, it does answer a multitude of questions but it doesn't make you feel better. Everything is kind of still the same but worse. Now I have a zillion questions that I might have never entertained before. So no, I don't have great insight but I do have a lot of anger right now. A lot.
Friday, February 1, 2013
Birthday Palooza
Here we are, it is February 1st and I am bracing myself for birthday marathon to begin! Some how our family has picked the shortest month of the year to have as many birthdays as possible. We have a total of 6 birthdays to celebrate in February and that is just our family members, we have quite a few friends with their own birthday celebrations. Last year when Nevin turned 4 and Gavyn turned 2 we did a combo birthday bash and it worked out well. I decided to do the same this year and we picked a cars/trains theme. Originally they wanted Lightening McQueen and Thomas but honestly, I can't bring myself to do another full blown Lightening birthday, we've had 3 already. I found some super cute ideas on Pinterest for transportation themed celebrations. I have been told I completely over do the birthday party (maybe just parties in general) with themes and crazy planning but, I LOVE it! I really do. :) With four kiddos it is nice to have one special day that gets to be about them, even though Nev and Gav share a party it can still be special for each in their own way. My friend is coming Saturday to help me with the kids while hubby is off shooting his TV special. We decided to tackle the cardboard crafts together and make something awesome!
I can not wrap my head around the idea of Nevin being 5 and starting kindergarten this year, much less Gav turning 3 and starting preschool!! Today I chatted with Nevin's teacher to get the bus set up to take him to class when Gavyn starts preschool. That is crazy to me but I think it will be good for him. I never thought I would use the bus (they scare me for various reasons) but with the crazy opposite schedules my kids schools are on I feel my hand is forced. Gav and Skyler go to school at 8:30, Gav gets out at 11:30, Nev goes in at 12:15, Skyler gets out at 1 and Nev gets out at 3:15. Yeah... Thankfully in the fall they will all go to school at 8:30 but they will still all get out at different times. Oh well. I am still excited for Gavyn to start preschool and Nevin to start kindergarten in the Fall. I think it will be good for both of them and they will get so much help through their IEP's. The kind of help I can't give them alone at home. Should be an exciting year.
I can not wrap my head around the idea of Nevin being 5 and starting kindergarten this year, much less Gav turning 3 and starting preschool!! Today I chatted with Nevin's teacher to get the bus set up to take him to class when Gavyn starts preschool. That is crazy to me but I think it will be good for him. I never thought I would use the bus (they scare me for various reasons) but with the crazy opposite schedules my kids schools are on I feel my hand is forced. Gav and Skyler go to school at 8:30, Gav gets out at 11:30, Nev goes in at 12:15, Skyler gets out at 1 and Nev gets out at 3:15. Yeah... Thankfully in the fall they will all go to school at 8:30 but they will still all get out at different times. Oh well. I am still excited for Gavyn to start preschool and Nevin to start kindergarten in the Fall. I think it will be good for both of them and they will get so much help through their IEP's. The kind of help I can't give them alone at home. Should be an exciting year.
Tuesday, January 29, 2013
Amazing
Yesterday I witnessed the most amazing thing I have seen in a long time.
Gavyn stood up, unassisted from a sitting position!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is HUGE! Beyond huge! I almost lost my mind watching him do it. And he keeps doing it. Seriously, you may have no idea how big this is but it is SO big. He amazes me e-v-e-r-y s-i-n-g-l-e day.
Gavyn stood up, unassisted from a sitting position!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is HUGE! Beyond huge! I almost lost my mind watching him do it. And he keeps doing it. Seriously, you may have no idea how big this is but it is SO big. He amazes me e-v-e-r-y s-i-n-g-l-e day.
Monday, January 28, 2013
Chatter
1. He will come in whatever room I am in and say, "Mom! Whachya doing? What's that?!"
2. Every time you give him something he says, "Thank you! You're welcome!" We are working on who says what but it is to stinkin cute that he says both.
3. Anytime you come around a corner or there is a loud noise, "Oh my! You SCARED me!"
Hilarious.
Speaking of talking... Skyler is home from school and keeps yelling at me from the kitchen that Monopoly is all set out and when am I ever going to be done on the computer and come play with him. Endless talking... endless... :)
Saturday, January 26, 2013
Taking things for granted
It has been an interesting 36 hours around our house. I can't go into detail right now but it has me examining our life, where we have been, where we are now, where we are going. After a whirlwind of a day, we had gotten home from church, cooked up some dinner, fed the kids, nursed the baby, fed myself and was finally feeding Gideon some yogurt. As I sat feeding him Gavyn walked over to us with a toy for Gideon, I gently told him not to put the toy on the tray because it had yogurt and mashed up pieces of cracker on it and I didn't want the plush toy getting dirty. Gav stuck out his lip, put on his angry eyes, gestured at me madly and "stormed" off. As I watched him holding this big toy and walking away I marveled at how far we have come. Only last December (2011) did he receive his first medical walker and start to slowly figure out how to walk with it. In July he only used the walker (lovingly named Walk-Walk) when we weren't at home and now we have passed the walker on and there is no looking back. Such a short time and huge strides. Our life is constantly changing and you never know from one minute to the next what will happen. Some progress may seem to take forever until, you look back at it and realize what a short time it really was, especially in the grand scheme of things. Waiting... I think it is one of the hardest things we endure.
Thursday, January 24, 2013
God's Calming
Who's on Pinterest? I know you are and I know you love it, who doesn't?! I saw this little graphic (is it considered a Meme? I'm not sure since it is not humorous, not sure what you call these officially but, I love them!) a couple weeks ago and I feel like this thought has been a reoccurring theme in my mind right now. Our church has been doing a study on Galatians called Freedom. We have been slowly going through the verses and breaking it down into how Christianity brings you freedom from so many things. Last week our campus pastor brought it home with Freedom from Self Effort and this line really stuck out to me:
"Self effort - self effort, it will not change you, it will not transform your character."
I'm not sure that that connects outside of brain but here is how I know this to be true.
My story before I had two special needs kiddos was something like this:
I grew up in a Christian home, my parents and grandparents were all strong believers and were a good example for me. I grew up in a very legalistic church that my family got sucked into for awhile but eventually my parents realized their kids hearts were more important than rules. They started participating more in things we were into like going to concerts etc. When Ryan and I got married we found the Journey to go to and that has really helped me grow.
I knew the gospel story and could tell you it but it really was not in my heart. I really thought it was though. I thought I got it all but I really did not. I have a very distinct memory of a moment when Gavyn was in the hospital and this is what happened.
I think we had been at Glennon for a week. We knew he had hydrocephalus at that point and we were not sure if it would somewhat resolve on its own once he wasn't sick. We did know the pressure on his brain had increased and it was causing his brain to be pushed down on his spinal cord which was causing his body to crash. I was rushed out of the room, the neurosurgeon was rushed into the room, and he (the surgeon) placed an external shunt in his brain to drain off the fluid. Being scared was an understatement of how I felt at that moment. Terrified doesn't even come close. I sat in the hallway on a bench by a window and prayed over and over again for him to be ok I was not ready to bury a baby. It seemed like an eternity before they came to get me. He was knocked out when I got to him, there was a shunt placed on the top of his head, it was hooked up to a bag hanging on a pole and the bag was slowly filling with his extra CSF. At first I was ok, I rubbed his little hand, I kissed his little face. I'm not sure when but at one point my mom got there and was standing across from me, quietly crying and rubbing his arm. Suddenly he opened his eyes and looked at me and all I saw in his little eyes was complete terror, it was like he wanted me to pick him up and make it better and I couldn't. I couldn't even hold him because he was hooked up to a ventilator at that point. I felt beyond helpless. I could not stop crying. I could not quiet my mind and I could not make the storm of medical issues stop. I was entering my new life and it was painful and it was confusing and it was more than I could handle and I felt broken. And in that moment the Gospel became real to me. Brokeness became real to me. If letting Gavyn pass from this life to the next was going to make him whole I was willing to let him go. And in that moment realizing that the God of the universe sent his Son to die because that was the only way to make me whole and restore me to him became so real I could touch it. I don't even know if that makes sense but it did.
And that is when my real relationship with God began. Because I knew I was entering a storm and I knew it was going to rage around me and I knew the only peace I was going to get was going to be from Him. Not because this was going to end and not because I was going to read the right book and be able to change myself or the kids. I knew it was not going to end but I knew God would hold me through it all.
33miles - Arms The Hold The Universe
I know it seems like this could beThe darkest day you've known
But believe you me
The God of strength will never let you go
He will overcome, I know
And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright
And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go
Through many dangers, toils and snares
You have already come
His grace has brought you safe this far
His grace will lead you home
And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright
And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go
You can hope, you can rise, you can stand
He's still got the whole world in His hands
You can hope, you can rise, you can stand
He's still got the whole world
The whole world in His hands
And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright
And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go
He will never let you go
He's still got the whole world in His hands
Still got the whole world in His hands
Genetics
We have had a very adventurous week (last week actually!) so to speak. When Gavyn got sick
(after his birth) it was very public. My hubby designed a fb profile picture of Gav that
read 'Pray for baby Gavyn' and people went crazy with it. I'm not even
sure how many people used it as their own profile picture or just posted
it on their wall but I'm sure it was in the hundreds. Everyone we know
and everyone 5 degrees removed from us knows about Gav and they all ask
about him. It really is awesome that three years later people still
genuinely care about him and us. What is odd about it is that not as
many people know of our struggles with Nevin. He was just two when Gav
was born and at that time his delays were becoming more apparent but
were over shadowed (in a way) by Gavyn's illness and recovery. When people
ask me if I worry about Gav I can honestly answer them that I do not
worry about Gav as much now, and I truly worry about Nevin more. Gavyn
has a diagnoses, but Nevin does not, and that adds more anxiety to it.
So, while Gavyn has had a great team of therapists and doctors for three
years, for those same years we have been searching for answers for
Nevin and for the right combination of doctors, therapists and school.
He is our little puzzle that we are trying to put together and see what
the picture really is all about. Right now we just have bits and pieces.This week we took the plunge into the very unknown and scary territory or genetics. The idea of having his genetics tested and mapped out has come up a few times over the last three years but each time I would consult with our pediatrician and also Nevin's endocrinologist and they are both of the mindset that his genetics are fine and most of his issues can be traced back to his thyroid condition. I have agreed with them and we kept putting the testing off. But last year during our visit to the cleft team, genetics came up again and we decided to take the plunge, if for nothing else than to rule it out and erase the question from anymore doctors minds. We sent in the paper work and waited. Now - that all happened the last week of May and Gideon was born June 13 so, a lot of things have gone by the wayside. Finally, in December I realized genetics never called us to make an appointment like they were supposed to. I called and was surprised to get the secretary the first try and get an appointment for the following month. Nevin's paperwork was sitting on the doctors desk in the pile of new patents he needed to review and Nevin's had not reached the top yet. Either there are lots of new patients coming to see him or he's very slow making it through the stack!
The idea that I was having my kids genetics tested to see if there is a missing piece did not actually hit me until I was sitting in the office with Nevin and bouncing Gideon on my knee. Suddenly, it hit me like a brick wall that this was not some normal check up, it was not something to just cross off the list, this was a serious visit that would in tail blood work and I was not sure what else. First we met his assistant who was very bubbly and friendly but also knew her stuff and went over a lot. We mapped out the family tree and I answered a lot of questions, hoping I knew all the correct answers. She left to review with the doc and shortly they were back. I was so impressed with the doctor when he came in. He put me at ease, he put Nevin at ease, he completed his testing of Nevin with him not even realizing the doc wasn't just playing with him. Once he was done checking him over and asking me more questions his assistant played with Nevin so that the two of us could talk. He answered the few questions I had but I was very honest with him and told him that although I have a million questions to ask I don't want to ask them or research them until we get the blood work back. There is no point in me worrying about all these what ifs because in two-four weeks we will have a more clear answer. I couldn't tell if that surprised him but I could tell he was pleased by it. I am hopeful we will get a call in two weeks tell us everything was fine but if we get the call to come in for a talk I am glad it will be with a doctor that I feel I can respect and trust. After our chat the nurse walked us to the lab where we waited for forever to get blood taken. The only nice thing about waiting was all of our doctors, nurses and our orthotist Barb ran into us and we got to chat with everyone and pass the time a little faster. Once it was Nevin's turn we saw our favorite tech Dougy who always talks to Nev and understands him. She's awesome
And now we wait. We have already waited a week since I started to write this post and hopefully next week we will get the call. I am already getting nervous every time I hear my phone ring.
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