Tuesday, March 9, 2010

This and That and The Other

First off, I want to mention a couple of sites that have been a huge help to us lately...

Our Occupational Therapist is an incredible help in Nathan's life and in the life of our family as a whole. She has been telling me bits and pieces for the past few months about a bowl she was creating that literally is stuck to the table in order to help kids eat. For any of you that have ever used the suction cup bowls, you quickly realize that they can become unstuck by our crafty kids quite easily. Nathan has been a slower learner on spoon/fork feeding himself, so we have been working often on this skill over the past few months. One hiccup he has had is that he often has to work intently on keeping the bowl still just so he could get a good bite of food on his utensil. It has often been frustrating for him. So, our OT gave us one of her new bowls, and it has been such an incredible help! I HIGHLY recommend this bowl to every little toddler out there. http://www.todays-mommy-baby-toddler-guide.com/spill-resistant-bowl.htmlAnother company that has been an incredible help to us lately has been Miracle Flights. This is a nonprofit charitable flight organization that helps families fly their sick children to areas of the country to receive medical care. A dear friend told us about this organization a few months ago, so I decided to contact them regarding our upcoming trip to Houston. There is a good bit of paperwork to fill out and some information needed from home doctors and from the doctors the child is visiting, confirming the diagnosis and reassuring that the child is medically capable of flying on commercial airlines, but the leg work is well worth it. The workers at Miracle Flights were a joy to communicate with...just so kind and thoughtful. We recently received our flight information from this company, confirming that they were able to get a flight for Nathan and myself for this upcoming trip to Texas. In the midst of everything, I am so very thankful that there are organizations like Miracle Flights. www.miracleflights.org
On the other news, Nathan is doing really well...really really well. The past month has been a wonderful month for him in regards to his physical health, and it has been a wonderful month in regards to our emotional health. During the fall and winter, so many things were happening back to back and sometimes it felt like we were in a constant state of mini-crisis mode. Starting in February, Nathan was relatively well, and our appt schedule was clear for an entire month. Oh, that month "off" of most things medical was exactly what we needed. It was a breath of fresh air and gave us the ability to hit the ground running again. It felt like a vacation of sorts.March started his string of "spring cleaning" appts...the appts that he needs once a year to make sure that certain systems are all still A-okay. His ophthalmology appt was perfect. It also helps that his ophthalmologist is the mom of a kid in Abby's class, so we see her around school from time to time and catch up at different functions. She super sweet and a great doctor. Some more upcoming appts are cardiology, immunology and neurology...and then we have the week in Houston the first of April.The little guy had a GI appt this morning, and it also went really well. He has gained a bit of weight and height and has made us and his GI docs very happy. I'm telling ya, he's had an awesome month! Due to some weird labs and other GI issues, we are doing a little work up for pancreatic insufficiency and treating for a probable small bowel bacterial overgrowth. He had lots of labs run today...LOTS! Like "9 viles of blood" worth...literally. We needed labs for his upcoming immuno appt, to check on his anemia issues, and to check some vitamin levels. We were able to see our favorite phlebotomist ("favorite" and "phlebotomist" should not be mentioned together, but alas, she is really great) and Nafey dude didn't cry at all. Through all that blood, he just sat there and sweetly ate his Dora fruit snacks while running commentary on the identity of the fruit snack that was about to be consumed. He's getting so big.So, busy month ahead of us, but we are hopeful that Nathan will continue to do as well as he has been doing. It is so much fun to see him blossom into this fun little guy. This is truly a wonderful time in our lives.


Amanda on March 10, 2010 at 10:16 AM said...

Those pictures are just precious and I love how you captured his little boyness(if that is even a word!). He is precious. So, so glad he is doing so good. Y'all deserved a break.

Kayla on March 10, 2010 at 5:58 PM said...

Let me know the dates that you are in Houston and if you will have any free time. I would to see you if you have time and if I can get to Houston.

Amber on March 10, 2010 at 6:24 PM said...

Kayla, we will be there the first full week of April. Nate has early morning appts on April 6th and 7th and lab work after Tuesday probably, but we should be free most of the rest of the day either of those days. On April 8th, he will have an MRI and other tests, so that day will be spent in the hospital. Please let me know if you will be able to get to Houston. I'd love to see you!

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