Wednesday, May 29, 2013

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!"

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!

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

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! :)