Today was a good day. No, today was a great day! We had our regular therapy appointments and this afternoon we had our first team meeting. At the therapy appointments for breakfast I co-led and then for lunch and afternoon snack I led the entire session with the therapist in the room but only chiming in when necessary. Naomi really pushed the envelope at lunch but thankfully she was redirected and tried the food and was rewarded with time playing on the zip line and ball pit. I got to chat with most of the team members today before the meeting and then at the meeting and I am honestly very excited for week two.
Here is the synopsis from the meeting. Naomi is exceeding her calorie goals. She got an average of 2230 calories per day 1989 of those by mouth. Were doing a major happy dance for that one, right along with Dora the unit secretary who dances with Naomi after every meal. She also feels her muscles to see if they are growing and both she and Naomi agree that they are. She's going to be one strong girl when we get home. Naomi is getting about 75% of her fluid goals but only 50% by mouth. Best part is she gained weight. Her admission weight (Tuesday morning since Monday was with clothes and in the afternoon) was 16.7kg and today she was 17.1kg.
Last week we had five goals
1. Sitting for 30 minutes at meal times with a minimum of negative behaviors. GOAL MET
2. Accept a minimum of 2 oz of a beverage in each meal with minimum prompting. GOAL MET, EXCEEDED
3. Accept a minimum of 4 oz of preferred solids in 3/5 mealtime opportunities with minimum prompting. GOAL MET
4. Accept a minimum of 1 oz of non-preferred solids in 3/5 mealtime opportunities with minimum prompting. GOAL NOT MET
5. Me observing therapy and taking those lessons to non-therapy meals. GOAL MET
Four out of five is pretty awesome!
This weeks goals are
1. Starting Sunday no more formula through the g-tube, replace that with 8 ounces of water.
2. Accept and tolerate a minimum of 1 oz of a mixed consistency with minimum prompting during therapy meals.
3. Accept 5-6 oz of liquids during all mealtimes with minimum prompting.
4. No more high calorie supplements but keep high calorie foods.
5. Accept and tolerate a new form of a preferred food in 3/5 mealtime opportunities with minimum prompting.
6. I will lead all therapy meals with moderate assistance from therapist.
7. Start moving therapy to distracting environments like the cafeteria or outside in the courtyard.
I am hoping next week we can report meeting 7/7 goals. Perhaps we should have made a goal of falling asleep at a reasonable time, as I type it is a quarter to 10 and I can her Naomi still shifting around in her bed. Hopefully sleep will get better as first, being the weekend the hospital is emptier as no planned admits happened in the last day or so and also Rehab loaned us a trike (the halls are no longer safe with this wild child on the loose) and Child life gave us a Wii in our room with the Just Dance game so hopefully she will be more physically tired at bedtime.
I am a little nervous for the weekend as I am left to go it alone for the most part. One of the therapists will come by for Sundays breakfast but otherwise as far as the feeding team goes it is just me and Naomi. Hopefully we both make it to Monday with smiles still on our faces.
Naomi is feeling a bit homesick today, she started asking when we go home and wasn't thrilled with the answer, if you'd like to send her an email you can do so here.
http://www.chocforms.org/patients&family/patientEmail.cfm
Day 5 17.1 kg and 240ml of formula through the g-tube (but not for much longer).
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Major grump this morning. This is how we went to our breakfast therapy session. |
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Clear the halls, Naomi's on the loose. |
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They even let us take the trike out front, but the proximity to traffic made it much more fun for Naomi than me. |
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Trying out mixed textures with Dirt Cake. She at the worms and one bite of the pudding cookie mix. |
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Naomi insisted she needs two pillows to sleep. |