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.

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!

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

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! :)

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.

First Steps

 This post has been long coming. I had to get pictures of our three AMAZING First Steps therapists that had been with us for three years. I was really on top of it and got a picture of our PT Adele first, then Jill our ST and then an epic fail of our OT Jenny because her last visit with Gav pretty much did not happen. He was having a very bad day and completely melted down and would not work with her at all. I didn't get a picture and was super sad that they really didn't have a "goodbye" session. Thankfully she works at PS Kids where Nevin goes once a week and we knew we would see her. After forever, we finally got a picture of them! That was at least two weeks ago and then I needed to get all the pictures off of my camera. This morning I finally did! Only to realize that somehow the picture of our PT Adele got deleted!! Oh my gosh guys, I'm so flipping mad about it. I also can't find any of the pictures of Nevin when he worked with Adele. One of the most important persons in Gavyn's life and I don't have a stinkin picture. I'm gonna have to e-mail her and see if she can swing by one day for a do over. Here are the pictures I did get:

 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!!

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.