So far we have had a fabulous time home this summer. Clara is starting to love stroller rides, but only in the evening when the sun has gone down alittle. (We call her our little vampire)
Maddie jumps on her scooter and off we go. This is actually one of our goals with Clara with her case worker, "stroller rides".
Clara absolutley loves to smile. She especially does with me. I have to sneak around her PT and OT therapies because I distract her. Instead of working on sitting she is turned backwards smiling at me. I of course just love this! She loves all of us, but there is something about her mommy!
We are still working on increased volume with formula. and weight gain. No solids yet, as she is not sitting up still and the feeding therapist thinks she needs to wait. Hopefully near the end of July with our next appointment we can give it a try.
We are soon heading to the beach for an Edgerton beach trip. This is something we have waited to the last possible moment to decide on. A week far away from Chapel Hill and her docotors, any hosiptal really, no nurses, lots of repsondsibilities is a lot. However I realize as much as I want Clara to just be a 9 month old, she needs everyday experiences. Being with family and all the grandkids will be good for her developmentally and give everyone in the family a chance to get to know her better.
Jason and I will be in charge for an entire week without our team of help, which is intemidating. I keep telling him I hope we don't mess her up too bad in 7 days :)
Along with basic bottles, diaper changes, and play time there is trach care twice a day. 30 minutes of PT three times a day, and hour of eye patch time, meds, and nebulizer treaments twice a day. Wew..add in some fun and thats a busy day. I plan on making a schedule to just keep us straight. I none the less know we can do it together! No it isn't going to be like our other family trips, but it will be just so great to feel like a normal family of four.
The packing will be insane. More medical supplies and equipment than probably clothes and beach toys. Clara just still comes with alot accessories! Thank goodness our day nurse made a list and packed for us. She is the best!
Clara's 7 day Beach Lists
- Pulse Ox, 2 extra probes, 7+ pieces of NEO tape
- portable suction in bag with car charger, 14+ suction caths, tons of saline bullets, gloves
- Cool mist, 7+ bottles of sterile water, 2 trach masks
- 7 Trach ties for daily trach tie changes, 15 HME's, trach care kits, lube
- portable compressor (yes these come portable), extra O2 tanks, Ambu bag,
- purple emergancy trach bag with extra trach inside and one BIVONA for trach change on Wednesday.
- Hand santitizer
- diapers, wipes, crea,
- several bibs, burp clothes,
- medicine, albuteral included, cooler for anitbiotics
- discharge notebook with phone numbers, insurance stuff
- splints, eye patches
- nebulizer
- pacies and clips
- bath tube, soap
- play mat, boppy, toys
- formula, bottles,
and of course clothes, hats, suncreen, stoller, etc., etc!
This is all for one little baby and we are so blessed to have it all.
Have a wonderful fourth of July.
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