Greyson continues to be able to do more and more on his own. He still needs his walker, but as you can see in this video he is not “tied” to it! It is now just for support as he continues to gain strength, balance, and courage to walk on his own.
This is how our boy looked just before he stepped out the door this morning. What a handsome student!
Here is another picture from today, Greyson entering his classes playground. This is his school nurse and his primary nurse Tina with him. He had a pretty good time at school, I guess it was a bit overwhelming for him at times, but he did well. He will go again tomorrow and then be done for the week. We are starting him two days a week and then will hopefully work up to full time which is four days a week.
So tonight we went to some friends house for dinner. After dinner Ron (the host) and I were trying to put a geometric puzzle back together that I had dumped out. We had been working on it for awhile when Greyson pulled himself up to the table and started placing the pieces in the base like it was no big deal. So we pulled the pieces out and kept working on it while Greyson played with Stacy and Susan. We still had not really figured anything out awhile later when here came Greyson back over to “help”. Well he dropped a piece in the base that I was holding, and instantly Ron and I looked at each other and said, “Hey that’s it!”
Had the puzzle solved within a two minutes after that. Keep in mind we had been working with it for a half an hour before that. Pretty smart kid! Oh, in case you didn’t know this, Greyson starts school tomorrow! I’ll be looking for a good math grade…
OK so I’m behind again, what else is new. Still haven’t posted any of Greyson’s birthday pictures, until now….and I’m only posting this one and maybe one more. Sorry. We’ve been busy with life and I need to get busy and update this blog for those of you who want to know what is going on!
Well we had Greyson’s party last week. Yep, he’s three. Still hard to believe. The party was a blast with a lot of Greyson’s friends and many of Greyson’s relatives from Bob’s side. This picture was from the party when a couple boys from church decided to help Greyson run around the yard.
This week we took Greyson to his school and he got to meet his teacher. She is awesome and we know that Greyson is going to have a blast. We are unsure how long he will get to go as we will have to pull him out of school if it seems there are too many respiratory bugs going around.
OK so I will try to get some more pictures up soon, or some video…or both. In the meantime know that he is still growing, learning, delighting, and trying his best to praise the Lord. He still doesn’t have his vocal cords moving yet, but more and more people are praying and we know that God is at work in the midst of this time. Keep praying, keep believing, and we will rejoice in all that God is doing as we wait for his voice to return!
Yes we let him eat a little cake for his birthday. We were cautious but just couldn’t keep food from him on his birthday! So, on his third birthday, Greyson finally ate a little of his cake!!! Ahhh this is the life!
OK so Greyson really enjoyed his birthday cupcake, but this was a funny shot that we had to include!
Was just thinking about all this again after Greyson’s birthday. Can’t remember if I’ve ever written it out so thought I’d do it here now in case I hadn’t. It’s more for me than anything, so read at your own risk. I’ve put a cute video at the end, and won’t be offended if you skip the writeup and just check out the video. In fact, I encourage you to skip the write up and just scroll down and watch the video!
Three years ago on September 25 my life was drastically changed forever. It had been a crazy month leading up to this date. 5 weeks earlier Stacy and I had learned that we were having a baby. We also learned that she was 19 weeks along. Two days later we went in and had an ultrasound, learning that the baby was going to be a boy. After trying for over 6 years you can probably imagine how excited we were. A baby…..a son…..and we were already almost half way through the pregnancy!! Unfortunately on that day we also learned there was a problem. Something called an incompetent cervix. Stacy was put on strict bedrest. God what could this mean? A week later we went to Tacoma to see a specialist. The news was not promising. Basically we were told that this amazing little boy would be coming into the world early, the question was how early? We were told we were told Stacy could have something called a cerclage but there were a lot of risks with having that this late in the pregnancy. Basically it could cause her to go into labor. We prayed and decided to have Stacy stay on bedrest. We made it to almost 21 weeks (pregnancy is 40 weeks) when Stacy went into the hospital.
After being in the hospital for awhile the feeling was everything was going to be OK. They were going to keep us overnight just for precaution, and I was told I should go home and sleep. I decided to go home and get a toothbrush and change of clothes before coming back to spend the night with Stacy. I got back to the hospital and was setting into my sleeping chair when the nurse said something about contractions. Con…what!?? Soon they were doing an exam on Stacy. I won’t get into all the details but the message was the baby was not staying in.
The Dr. called and I talked to him. It wasn’t our Dr. but the on call Dr. He was home but said he would come in if we wanted him to. Unfortunately he said it looked like Stacy was going to go into labor sometime during the night, and at 21 weeks the baby could not survive.
I don’t think I’ll ever forget that conversation or the way I felt when I hung up the phone and looked at Stacy to tell her what he had said. I don’t think I’ve ever cried out to God like I did that night. All night long as Stacy tried to sleep I just kept watching the clock and praying. When would the contractions start? When would it be over? God why was this happening? God why did you bless us with this child if we were just going to have to watch him die? Our Dr. was going to be coming in around 7. I would pray, cry, and watch the clock. The more I cried, the more I prayed, the more I questioned, the more I felt God’s presence. He never said it would turn out OK. He simply seemed to say over and over that He loved us. He seemed to whisper that we could trust Him no matter what.
The Dr. came in early in the morning to talk to us. We had made it through the night, wasn’t that a sign of hope!??? He talked to us about what was happening. Even if Stacy didn’t start having contractions she was going to develop an infection. The baby would get infected. This would lead to the baby’s birth. He talked to us about the magical baby number, 24 weeks. 24 Weeks is the age of viability when a baby has a chance of survival. The Dr. told us how tough it was to bring a baby into the world at 24 weeks. He then told us that it is even worse to bring an infected baby into the world at 24 weeks. They probably wouldn’t survive. If they did they would have severe brain bleeds, cerebal palsy, blindness, hearing issues, and on and on it went.
He then talked to us about ending the pregnancy. I’m totally against abortion. Stacy is as well. Yet in that moment we were confronted with a decision no one should ever have to make. Abort the child or move forward with the pregnancy knowing the child would probably not survive, and what life it made it through (be it minutes, hours, or days) would be filled with suffering.
Honestly we didn’t really give an answer at that time. We were devestated and all we could say was that we couldn’t decide to end the pregnancy at that time. The Dr. said that was OK and that he would be by later to check on us. Stacy had some more tests and the Dr. stopped by to say he was encouraged by the results.
It wasn’t until the end of the day that he came back. Things were still not good. Not good at all, but not quite as bad as they had thought. It was during that time we told him we wanted to do everything we could to give this child the best chance possible to live.
This was all on Monday September 10. On Friday September 21 we were transferred to Tacoma General after days of our Dr. calling and pleading for them to take us. He recognized that we were in a very dangerous place and wanted us to be in a hospital with a level 3 NICU so the baby would have the best chances if it were to be born early. We knew that at 24 weeks they would give Stacy steroid shots that could help baby Boudreaux’s lungs (that’s what we were calling him at this point) develop. On Saturday morning Stacy’s water broke. The risk of infection was very great. They were worried she would start to have contractions or the baby wouldn’t have enough fluid to stay alive. On Sunday September 23 they gave Stacy the steroids. We would not be to 24 weeks until Wednesday, but since her water broke they decided to give the steroids early.
On Tuesday September 25 I woke up and everything was still the same. Basically we were just rolling along at that point praying for Boudreaux to get more and more time. We knew the situation was bad, but we were praying for as much time as possible. Stacy was feeling warm had a slight temperature but her hospital room was warm so we didn’t think much about it. I had been eating hospital food for too long so I decided to go out and get something real to eat. I found a chicken Teriyaki place not far from the hospital and sat and ate it enjoying the nice day. As I started to head back to the hospital I decided to stop at Baskin Robins and treat myself to some ice-cream.
When I walked into the hospital room the nurse was taking Stacy’s temperature. She had a full blown fever. It wasn’t long until the Dr. Came in and told us that the fever meant Stacy had an infection. Boudreaux would have the infection too. The only chance he would have would be to deliver him. Officially we were at 23 weeks 6 days gestation. One day shy of the magic 24.
We had been told a bit about emergency C-sections. How they could get the baby out in just a couple minutes if they had too. After what seemed like forever they took Stacy back to prep for surgery.
By this time Stacy’s Aunt, cousin, and our pastor had arrived at the hospital. Then they came and got me. They started cutting at 7pm. I have never witnessed anything like that before. I expected a slow and calm surgery. It was quite a bit more rushed and violent than I was expecting. At 7:23 they pulled Greyson out and handed him to the neonatologist. I was too chicken to peek over the little curtain so I hadn’t seen anything, but I saw Boudreaux being handed over. I saw the Dr. Working to intubate him. I saw him pull the guide wire which I knew (from watching ER none the less!) that he had been successful in getting him intubated. He was SO SMALL!!! I just kept thinking…………he looks like a skinned rat. Sorry, but it’s the only image that came to mind. He’s soooooo small…..too small…..he’s too little to survive………
Well if you are reading this you know he did survive! Last Saturday we celebrated his third birthday.
It hasn’t been easy but Greyson is doing so well. Aside from the vocal cord paralysis (which we are still believing God is going to touch!) we couldn’t be happier. (oh yea, we named him Greyson on Wednesday the 26 after the TG hospital staff kept bugging us. We picked the name Greyson because you hear the sound of the word Grace when you say it. You also hear son. God has given us Grace to get through each day of this struggle through his son, so we find it fitting!)
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Pick up here if you skipped down:
Greyson continues to get braver and can take three or four steps easily. He now likes to use his walker to push up to things and then shoves his walker away. The scary part is when he wants to go back to his walker!
This is a picture from Greyson’s last day in the hospital. I don’t know but to me he looks like he is getting too used to the place!
We went to see Greyson’s surgeon yesterday for a checkup. He is encouraged by Greyson’s breathing and feels at this point the threat of having to put another tracheotomy tube back in is very minimal. This is good news and we are praising God for Greyson’s breathing!
On the down side when we looked at his vocal cords they are still both paralyzed. There may be some slight movement on the right side, but the left is still not moving at all. It can take up to six months to a year for the nerve function to return, if they are going to return on their own. Of course we will keep praying that they come back quickly, and God can heal in an instant! We will continue to wait it out for a couple more months to see if their function returns. At that point if they are still paralyzed we may do some temporary injections which will move his cords closer together and should allow him to make some vocal noise. This will also protect his airway for him to eat and drink.
On that note the Dr. ordered a swallow study to see what is happening when Greyson swallows. If he is able to swallow without it going down his airway we will be allowed to let Greyson eat again. This would be great as Greyson REALLY wants food these days!! We are hoping to get the swallow study done pretty soon as he is just attacking us when he we have food. We broke down and gave him some “tastes” just because he has been so insistent and we don’t want to completely discourage this since we have worked so hard to get him to want food. The tastes have really just been a touch of flavor and not substance so we felt pretty comfortable with letting him do that.
Tomorrow Stacy and I are meeting with the school district to talk about enrolling Greyson in school. He can begin school a week from tomorrow, since he can start as soon as he turns 3, which is this coming Saturday!! (Although we are probably going to wait till October 1 to start him, that way he can start slow, or maybe so we can start slow!)
Aside from all this he continues to get back to himself. He still gets frustrated at times because he can’t talk. He does make some noise at times, but we learned yesterday this is from other tissue not his vocal cords. Basically he pushes really hard and closes off other tissue (his false vocal cords) and is able to generate a real raspy sounding “voice”. While he doesn’t like it he can take around 10 steps in a row if we push him. Even though he doesn’t push himself in that way you can definitely see a difference in how he is using his walker. I think he is starting to realize that it is easier to just walk than to walk and drag the walker with him. The bad thing is he also realizes he doesn’t fall well and is unwilling to give up a safety net that keeps him from falling and cracking his head. Maybe we need to get him a cane to use next? Or a helmet…..
Friday Greyson asked his nurse to go potty so she put him on the little toilet. Well something went wrong and there was ….. let’s just say an “accident”. She was laughing so hard about it that Greyson started to laugh. The video below was shot shortly after this episode where clearly Greyson and his nurse were still cracking up about it.
I know I haven’t posted anything in a couple days. It has been hard dealing with this vocal cord paralysis. Due to the fact that the vocal cords protect our airway when we swallow, Greyson can’t have any food or drink by mouth. Now he has never taken very much anyway, but being cut down to zero has been rough. The reason? The boy REALLY wants to eat! He has been attacking us when we have food, then signing “food” it’s been tough. So let’s focus on some positives, shall we? Last night we were sitting at the table and Greyson was on Stacy’s knee. She was on the phone with Grandma Terry and so she motioned for me to take Greyson as she mouthed “leaking diaper” (aren’t you so glad you are reading this story? Wait it gets MUCH MUCH better!). I took Greyson to his room and changed his diaper and then came back to the table and had him sitting on my lap. Well we had been there for maybe a minute when Greyson started slapping his belly and whispering “potty”.
OK so you have to know that while we use this word it has not been one we have “taught” him to say, and he has never said it on his own. I was surprised so I asked him if he had gone potty in his diaper. He said potty a couple more times then said diaper. Now I had just changed him so I didn’t think he had to go, but since he was saying potty I decided to take him and sit him on his little toilet. We got him one quite awhile ago but aside from sitting him on it a couple times have not done any “potty training”. Well I sat him on the little toilet; Stacy came in, and …..Yep he went pee! He acted pretty pleased with himself at that! Today Tina (our nurse) said he crawled down to his room and waved at her. She asked him if he had to potty and he said “potty” so she put him on the toilet. Once again, he went! Could we be on our way to potty training?!!?? That would be SOOOOOO awesome (have you priced diapers lately?!). We will see how things go.
Greyson also seems to be getting a little braver. Check out this video for some more exciting “firsts”!!!!!!!!!!