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This is How We Roll and other news….


This is what our rig looks like, well almost… we won’t be traveling with the vent and the oxygen on a stand, it will be on the stroller with the other gear, but you get the idea.


Off we go to our appointment in the Opthalmology Clinic.


It was a long ride but we made it!


So the boy is has a very severe astigmatism and needs glasses. These are not the exact frames but are quite similar to the ones we ordered.



Isn’t he so cute?

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15 thoughts on “This is How We Roll and other news….

  1. He is absolutely adorable. I just want to kiss those cheeks! My oldest son had extreme astigmatism as well as farsightedness and one lazy eye and started wearing glasses when he was two. I was so worried that he wouldn’t keep them on but it was no problem at all…..he realized he could see! He didn’t like when he didn’t have them on. Mattie looks so wonderful and I love the expressions he makes! Praying everything goes well and that you get home on schedule!

  2. I can’t stand it. He is the cutest little boy in glasses I have ever seen. How can he just keep getting cuter?

  3. He is just beautiful. It looks like a crazy mess right now but really it is not so bad. We took our son, with the same set up, everywhere with us i.e. church, mall, grocery store, etc. Remember this, since you already have everything and nothing more can be added, the good news is, things will only slowly disappear and go away i.e. the vent during the day, the oxygen, etc. You will have little milestones that will be oh so joyful. Even the weaning down on the numbers on the vent will be little bits of joy. You are a strong woman and have a strong family. Pretty soon the littles will be connecting the vent for Mattie when it gets disconnected. It will become natural for everyone in the family. We kept an emergency supply of one of everything in our van so we did not have to pack an emergency ventilator kit every time we left or come home because this or that broke. It becomes much easier to run to the grocery store without having to pack so much as it is already stored in the van. Soon this will be a distant memory. We had a trach for seven years and a ventilator for two of those years, we cannot even remember our ventilator years so much and our trach is only six months gone and the kids say “I cannot remember Zachary with a trach.” We are so happy for your discharge, you see, that is at least three milestones already crossed off of the list, training of the medical equipment, long hospital stay and heart surgery, you are already making great gains.

  4. This eye doc loves little ones in glasses! They are just so cute. Kudos for finding out he needs glasses early in his life. Now his vision can develop like it should! Way to go! 🙂

  5. Oh dear. You shouldnt be allowed to add anything to him. I think he cannot get any cuter, then any little thing is added… BAM! Cuter! How does he do that????
    Please write about what it was like to be on the move with him! Not staying in one confined area, but actually walking amongst others! What a time it must be every step of the way.
    You are an outstanding momma! Diana

  6. Thanks Dr. Molly, He has a severe astigmatism, and a bit of a lazy eye. He also has some weird scarring in the backs of his eyes that is typically caused by some bird virus? Do you know what I’m talking about? It’s baffling to everyone since the only times few times he was ever outside he was on a medical transport. We are blessed to have had such great comprehensive care for Mattie. They didn’t overlook a thing!

  7. Wendy,
    Thank you so much for your encouragement and for sharing some more of the details of your story. I was just talking today with the nurse saying that I want to have a travel bag just permanently ready to go, and not unload it at home ever. Just makes so much more sense.

  8. I wish I was smart enough to post Zachary’s one year photo. It is much similar to Matties. He celebrated his first birthday in the hospital and we bought party hats. We had to chuckle when we put the party hat on around his chin as he probably thought, great, one more thing, how long do I have to wear this now. Someone bought him a doctor’s coat and a stethescope too that he wore for the day, more around his neck…lol…you either laugh or cry and we found ourselves laughing much throughout all of this, sometimes I felt a little crazy laughing about such seriousness but when it got overwhelming we just chuckled at our crazy lifestyle.

  9. I am thoroughly in awe of your amazing family. My 2 1/2 year old has Down’s syndrome and is such a beacon of light in our family. It is just wonderful to see how people can appreciate the gift of children with special needs. All children have special needs. Our children’s special needs are just more apparent.
    Gotta say, love the glasses! I have a severe astigmatism myself and understand the need to be able to see! Now Mattie can truly see his amazing family!

  10. I bet Mattie enjoyed his walkabout. His world is getting bigger and bigger. I wonder what he will think when he goes outside and feels the wind on his face or hears the pitter patter of rain or the swish of a car going by. A whole new world! His glasses will certainly help him see it all better. : )

  11. But besides the travel bag that you never unload at home, we also had vent circuits and various other vent/trach supplies in the van as back up to prevent having to go home if the vent wont shut up or the circuit breaks. Plus we always had diaper bag type stuff in the van to prevent a simple run out to be a longer battle than it needed to be. You are a smart lady, you will soon figure out what works best for you and your family. Just want you to know that taking Mattie anywhere and everywhere is doable. We even had Zachary on a boat for Fourth of July fireworks with all of his get up.

  12. He just looks precious.
    I love the photo with his little leg up by his head! Flexin’!
    Know that the Lord puts you on my mind often and I love and read each and every update.
    Our family is praying this week for all of you as the transition to home takes place.
    You are such an inspiration.
    Press on my sister in Christ.

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