Friday, February 27, 2009

Our March Calendar

If I disappear for a brief time, or forget to update, feel free to remind me to update after any appointment!

(Keeping in mind that doctors appointments are on top of the usual:
M,T, Th Physical Therapy, M & F Occupational Therapy and T & Th Vision Therapy...)

Where Chase and I will be in March :^)

3rd~ Developmental Clinic @ Children's to discuss the MRI findings...

4th~ General Surgery consult @ Children's to discuss feeding tube
Early Intervention IFSP 6 month review

(I'd better mention the 5th is Dave's Birthday!)

6th~ 18 month check up (first visit since MRI and all other excitement)

9th-13th-One day this week we will have an appointment for someone to come out and look at the house to start the ramp project

19th~ Feeding Clinic at Children's to make final feeding tube decision
Grandpa Handy's Birthday!

24th~ Pediatric Ophthalmologist for his 6 month follow up

28th~ Chase's Benefit

I think we'll take April OFF!!!!!!!!

It's funny really, we've gotten so close with Chase's Early Intervention Coordinator that Alex is at her house, playing with her son as we speak! LOL Life is funny...and very...very busy........


Saturday, February 21, 2009

A bit of good news...

Chase had a scintiscan last week (to check for gastro esophageal reflux). The doctor at the feeding clinic was afraid Chase may have had reflux to the point that it was causing him to take stomach acid into his lungs...NOT the case. He did test positive for reflux, but only half way up his esophagus. No aspirations. He started taking Prevacid last night. Maybe he will start sleeping through the night again!

Also, on Thursday this week he had a Nuclear Renal Scan. He had this because he has had two kidney infections this year and they were checking to see if he had any scarring (damage) on his kidneys. If he had shown scarring we would have discussed fixing his ureters surgically to stop the infections. Our friend Allyson (the Nurse Practitioner in Urology who has been GREAT with us)called yesterday to say his kidneys are perfect and beautiful. Maybe the renal reflux is getting better on it's own!

It's fun to get happy news once in awhile!

Monday, February 16, 2009

Benefit Info...

Michelle asked that I post this for our local friends...we really, really appreciate all that she has done, and continues to do for us. Her and another friend, Paula, are going above and beyond anything I could have imagined...

Please join the cause and spread the word!


Friday, February 6, 2009

New Wheelchairs, new ramps and Feeding Clinic Appointments, OH MY!

Chase was seen at the Children's Hospital feeding clinic this morning. His intake has gone down to half of what they want it to be and he is becoming more and more "congested" after he has a bottle (he still doesn't do any solids).

We are taking him next week for a scintiscan to check for reflux. On March 4th we have an appointment with a surgeon to learn about G-tube surgery which would also include fundoplication ( ). After this appointment, which is pretty much to educate ourselves on the pros and cons of the surgery, we will go back to the Dr. we saw this morning and decide whether we want to go ahead with the surgery. The doctor saw Chase eat a very small amount and heard the gagging that followed, he said this made him suspicious of aspiration. He did have a swallow study a few weeks ago, but he wouldn't eat much for it so they didn't get good results.

Because Chase is low weight right now he said we have to be careful because "Chase has very little reserve and if he got sick, he could get very sick"...this only makes me want the g-tube more. I went in there today ready to demand one (sounds odd, but we need to build the little guy up). The doctor said both cases have pros and cons, we keep feeding him as we are and he could end up with a serious case of pneumonia. If we do the surgery, there are the risks that come along with that as well.

On a fun note. The rep from Buffalo wheelchair came this week. We have Chase's paperwork underway for his "supercool wheelchair" and while we wait for it we get to keep the demo chair she brought which is nearly identical. We tested it out and took it to the hospital this morning (SQUISHED it in the trunk! LOL) It is SO nice.

We also have begun paperwork to get a ramp added to the house. I just learned today that we can get one to go over the stairs that wouldn't be permanent. I was very happy to hear that because we rent and I didn't want to make permanent changes. Our landlords said we can do whatever we need to, but this would just be easier.

Now we are on the market for a van, then Chase's Early Intervention coordinator is putting in MORE paperwork to get it modified for the wheelchair with a ramp etc...

BUSY BUSY BUSY! Hey, things are moving in the right direction, we're just trying to keep up!