My little warrior continues to amaze me. He is holding his own once again. I have to say with a little help from our friends here. I know that all the prayers are what helps him. He would probably be intubated by now, I know it. He is still on 1 liter of oxygen, today as we expected, his x-ray looks like crap. He definitely aspirated. Lucky for me he put on a show and vomited with my ped right there, she said he didn't protect his airway at all. I have felt that he has been very weak the last year or so. He hasn't been able to come off oxygen like he used too. His tolerance for therapies is not long. I put him in his stander and only after a minute or so the head falls to the side and I have to lower him down farther. My baby will be 4 in November, and he's about as strong as a 1 month old baby. But he keeps knocking these ball's out of the park. Boston needs to call right now, because I have so much confidence in him, I feel we are ready to tackle anything. He is still quite weak, sleeps a lot. His heart is still bigger than it has been, we will save those questions for when we see cardio at the end of the month.
I stole this pic from Michelle. I love it. He was so out of it on Monday when all of his friends were here, so I was amazed that his eyes were open in this pic. I'm also amazed at how my Jaxson has touched so many. He was born with Down Syndrome and complications that come with it. He was given complications that don't come with it. He battles everything with such an easy going temperment. I still can't believe I was chosen to care for this true angel.
26 comments:
Can you call Boston, What hell is taking so long. I bought that Mark Schultz song from Itunes. I love it. Well I hope things start to grt better. Love ya guys.
We'll keep the prayers coming his way!!!!
I love your sweet angel. I cry every time I read things about Jax struggling... even though he is fighting so hard. I pray daily that Boston will call you. Please, please call if I can help in ANY way. xoxo
This is so very touching! Jaxson is lucky to have you as his mother. I will keep you all in my prayers! And keep my fingers crossed that you hear from Boston soon!
I have been checking your blog all day - thank you for the update. KEEP FIGHTING JAXSON!!! You have lots of people that love you :-)
And you are doing a wonderful job as his mommy. :-)
I'm so happy to hear that your little warrior is holding his own! I've been thinking about him and you all day and praying often! I think I worry about Jax just about as much as I worry about my boys!
Isn't it an incredible feeling being entrusted with such a huge gift like Jaxson?! It's a lot of worry and hardship, but it is such a blessing too!
I pray that he continues to get back to his normal and that Boston will call you soon! I think that Jax has enough fight in him for just about anything that might come his way! He is such a trooper and such an inspiration!
Give him a hug from me and Gavin! HUG!!!
Also, did your ped ever say anything about daily nebulizer treatments on Jax? I know that I asked you this before, but I'm still thinking that they would help him, if they were done on a continuous basis. If his lungs look like "crap", then he could probably use the treaments long term for helping to heal them.
Keep fighting Jax! LOVE YOU!
It is a beautiful pic of Jax. We've said several prayers for the little guy today!
I LOVE that picture too! He is our warrior...a warrior to all that love him! When I held him that day, I didn't just hold him, I talked to him, I spoke to him, to his precious spirit and I believe he heard me. I told him how much he is loved and what a perfect, sweet, strong angel he is...he heard me, I know he did! Love you all very much and will continue to pray for him to fight, fight his way back, fight hard!
He most definitely is an angel and he is amazing in every way.
Keeping Jax in our prayers, the pics are just precious
Just goes to show what a truly amazing Mama you really are. To know how lucky you are, even with all the hurt and pain you are in worrying over your child. We're a very lucky bunch aren't we?
Our kids are a real gift from above.
Thank you so much for updating. I'm SOO GLAD that Warrior Jax is fighting on! I'm praying so hard for him & for Boston. Lacey, I have tears as I'm writting this...I know how badly Jax needs them.
Praying & hoping that he has another good day tomorrow. So many hugs & so much love from Dillon & I. Only wish we were not so far away...
PRAYING FOR YOU LITTLE MAN:)
Lacey, of the hundreds of blogs out there, written by parents of babes with Ds, this is the one I'm drawn to the most. This is the one I have to check every day, and am a little disappointed if you don't post for the day. I'm not sure why I'm so drawn to little Jax - because he's so adorable? Because he's such a fighter? Because he's an inspiration? Is it because you are an inspiration in all you do to care, advocate and fight for him? All the above, and more.
I hope you hear something and I hope it is soon. I just don't understand how they can keep putting you off. I know how frustrated I am, I can't even begin to imagine where you are. If only I weren't on the other side of the country, I would have been at the party and Landon and I would be there to visit you and Jax as much as possible!! HUGS!
He's a trooper, for sure. I hope you hear from Boston soon. We'll keep up the prayers.
I am Gavin's great aunt (Jen's aunt) and I've been following your blog for sometime. Your little boy has touched the lives of many. He truly is an inspiration like Jen's tshirt read.
-Joly Windschitl
Jax was entrusted to you and Ray because you are both two amazing parents who love Jax unconditionally and will do anything,go anywhere,to ensure he is taken care of the very best he can be.I know he can find his way through this.I know it.I feel it and I see it and so I pray it,irregardless of our conversation today!Kiss that boy ... can't wait to do it for myself.
We just got back from vacation - I will have to email you about yellowstone - awesome!!
Anyway, I quickly came on the computer to check out your blog because I have missed the Jaxson updates while we have been gone. I am so sorry that he has had a rough week. We will add our prayers to the many others being said that he will continue to fight until you get some word from Boston.
I am so sad that I wasn't in town for the BBQ - I would have loved to have been there and met so many wonderful people - maybe next time. I bet you guys just had a blast with all those cute kids in one room!
Please let me know if I can do anything to help you or Jaxson out! You guys are such troopers and again Jaxson is so lucky to have you....
Loves from Kristi and Carter
I'm so glad all our prayers were answered. He is so amazing, I just loved being in his presence. We'll be praying that you'll hear from Boston.
How about you let me know when you would be able to come up this weekend and we can work it out. We'll be there Friday afternoon, Saturday late afternoon, eveningish and Sunday around 5:00 - 9:00 or so.
Just came across your blog and reading about Jaxon and everything such a young life has already had to face has left me very emotional. You truely have a warrior on your hands, so brave and such a fighter, not to mention such a darling little boy, he is soooo cute. You are so brave and each day I come across more and more wonderful amazing parents going through such tough situations and I feel so humbled. Each one of you and your beautiful children are an inspiration.
My continuous prayers are with Jaxon and with your whole family and as a mother my heart goes out to you. I am sure Jaxon isn't a fighter for nothing and he like all our little ones has his very own special angel watching over him.
Keeping fighting Jaxon, there are so many prayers coming your way......
Call Boston! Call them until you are blue in the face. Don't wait for them to call you! Push the issue that he needs to be seen RIGHT NOW!
Hugs - Tiff
What beautiful photos of a beautiful little boy. Lacey, you are an amazing woman and the strength that you and Jax have shown is an inspiration to us all. I am thankful each and every day that I am able to follow your journey. Continued love and prayers to all of you....I know that my angel is keeping watch over your sweet boy! :-)
Warrior indeed! I will pray for his strength to fight through this latest battle, but I know he will prevail. He HAS touched many, as have you Lacey!!
I wish I could hold that precious angel, I am envious of Michelle! We are all blessed to have these angels of ours, these angels made with 47 pieces!
Can we do anything to get Boston to call sooner? Sign a petition, write letters, call, email, anything???
They have to know how urgent it is to see to Jax!
Got you all in my prayers!
Sorry he's struggling so much. What a lucky boy to have YOU as his mother. I'm praying you'll get to Boston SOON! You know you have a place to stay if you need it.
I agree - I can't believe he's not intubated. Oh sweet Jaxson.
Is Boston it? There is no one else? Texas Children's?
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