I'm savoring this sweet voice, because it will be gone after Thursday. At least for a little while. I'm hoping he can figure out how to talk over it, but with the cognitive ability of a 2 month old, I don't know if he'll be able to. I don't know yet what time we go in tomorrow. Of course I will let everyone know, and the laptop will be with me. The butterflies are in full swing right now. Its like when you have to get up and talk in front of a lot of people. I don't think I was this nervous about his heart surgery. But thats probably because I was thankful they were finally fixing him so that we could finally go home after 4 months :)
Ignore the noisy brothers in the first video.
Another good thing thats happened is we just recieved a check from a fundraiser that was done for Jax in August. This family of a heart baby did a ride to raise money for their sons medical bills. Well they want to make it an annual thing, and since their son is doing well right now, they were looking for another family to donate to. The talked to the president of IHH, a heart group that we are a part of, and I guess like 5 people mentioned Jaxsons name. Even our cardiologist said Jax. I was so touched. They were expecting to raise thousands of dollars (I guess thats what they raised last year), but bad weather made them move the ride to the next weekend. Then they had bad weather again so they didn't have as good of turnout, but they raised around 700.00. Well that will buy a portable pulse oximeter that my insurance won't cover, and also a small bed for him so we can move him into our room. You know that every penny helps with a medically fragile child. I'm waiting for them to send me some pictures so I can post them.
Love the videos. Jax is one lucky little guy to have so many people who are praying for him. We'll be keeping a close eye on your blog and awaiting updates. Prayers to all of you.
ReplyDeleteI love these videos. What a sweet little voice! I hope he learns quickly how to make noises over the trach.
ReplyDeleteI will be blog-stalking you tomorrow to hear how things go!
You'll be surprised how they can talk over the trach. Kids are smart that way. :) They also have what's called a "passy-muir" valve that you can put on his trach. It's a one-way valve that lets him breathe in through the trach but he exhales up through his mouth which allows for sound to travel past the vocal cords. Some kids tolerate it, some don't. Ask about it...usually speech therapists will know more. Good luck! You are in our prayers.
ReplyDeleteWhat a sweet voice he has! He sounds a lot like Gavin when he talks! I'm glad that you got him on video!
ReplyDeleteI would be so nervous too, if I were in your shoes. This will be a huge change for you! I bet he will do marvelous with the trach though! I can't wait to see how far Mr. Jaxson will go with a better airway! He has a TON of fight in him and I have a feeling that Jax will find a way to talk, trach or not!
Could you please e-mail me your address at:
javanderwall@yahoo.com
Thanks!
I'll be praying!!! Hugs!
Great videos! Jaxson is so lucky to have such amazing parents. We will be checking in. Give him big hugs and kisses from Kansas!
ReplyDeleteAlways in our thoughts and prayers
Angela and Phenny Man!
I always tell you this... but I LOVE his sweet stories. I could listen to him talk all day. He will be in our thoughts and prayers. Love you guys...
ReplyDeleteHe is so precious! I love the videos. You will all be in our thoughts and prayers!
ReplyDeleteI've been following your sweet Jaxson for some time now and pray for you all often. Tomorrow I will be praying and checking your page throughout the day!
ReplyDeleteIsn't it amazing how God provides for us when we have a need. How wonderful that that family was able to bless you with that money. I can't imagine the strength it takes to do all you do. You're an inspiration and sweet Jaxson always makes my heart smile!
Oh Lacey! I pray and hope that all goes well tomorrow. Thank you for sharing that cute video with us so I could satisfy my Jaxson fix.
ReplyDeleteI remember hearing him talk for the first time in a while. Mia kept sticking her nose at him haha. I can hear Carter! Send him to me!!
ReplyDeleteThose videos are great. I have never seen him be so vocal or move around so much. Is that normal for him or is he doing more since his last procedure. Either way, I LOVED seeing him in action. Will be thinking of you guys and saying prayers all day tomorrow. What a wonderful gift that family gave you!!
ReplyDeleteThe videos are precious! I am praying for you guys Lacey, good luck!
ReplyDeleteSo lovely to hear Jaxson's voice! I'll be thinking of you all tomorrow.
ReplyDeleteLacey - holding you close in prayer as you prepare for another big day with your little guy. Keep updates posted please! I just hurt for YOU to have to watch your little one go through yet another procedure. Trusting that the LORD is holding him every moment that you cannot!
ReplyDeleteJaxson is such a cutie pie and loves his big brother so much!!!
ReplyDeleteThe Lord works in mysterious ways.....Just the other day you were talking about getting a portable pulse ox and being worried about the additional cost if your insurance didn't pay for it.... and here you receive a check......What a blessing!
I love hearing little Jax talk and talk and talk!!!! He has so much to say......
Little Jax and your family are in our prayers!!!!!
<3 ya!!!
Lacey we will be praying for you all tomorrow. Give Jax a big hug for us.
ReplyDeleteThat is wonderful! I love the videos!
ReplyDeleteGood luck tomorrow!
Hugs - Tiff
Listen to that sweet boy! I pray that everything went well today. {hugs}
ReplyDeleteI've been thinking of you and Jaxson a lot this week. You are in my prayers and I will be checking in on you tomorrow. Praying for a smooth procedure and that once he is healed a bit that he will be able to tolerate a passy-muir valve. Hope you get some sleep tonight.
ReplyDeleteOh what an answer to prayer girlie! You needed those items ever so bad. I'm so happy for you guys ;)
ReplyDeleteWill be praying tomorrow and checking in...Update as time allows.
Sent you an email with the info you asked for. Parkers package is en route :0)
Hugs,
Trina and Jophie
That's awesome that you got some money to buy the things that you need. I am thinking about you and will be keeping you guys in my prayers.
ReplyDeleteLacey -
ReplyDeleteMany prayers coming your way today!! I love the videos especially seeing the tenderness of your son with Jaxson. Kids are just amazing aren't they? We are sending as many guardian angels as we can to Jaxson today - (with six boys we still need some ourselves:)!!
Maureen Claypool
Loved talking to you yesterday.Made me feel as if you lived next door.Love to you all and prayers for a smooth procedure.I know you will miss his voice sweet friend but as soon as Jax finds his way to a stronger place,it will be back.I promise.Just remember what we said about our children,all our chromosomally enhanced children and how amazingly strong they are.Love you.
ReplyDeleteLacey, The video was so sweet. his voice will be back I promise!! As thrilled as I was Tuesday, believe it or not, as I sat by her in the hospital room, I felt the bittersweetness of the whole thing. While we were getting out of the trach, I had friends getting one or still having to have one. My prayers are with you. In His Love, Michelle
ReplyDeleteI had to laugh at the noisy brothers - and the whispered question. Piper does the same thing when I try to video stuff. And I even had to hush Steve last night when I was trying to video Max. Good news about fundraiser - very cool.
ReplyDeletesweet video! and wonderful news about the fundraiser!
ReplyDelete