Well, we finally got the news that we have been waiting for since Kayla was born last July. Kayla had a sleep study two weeks ago where she was tested off of the ventilator all night while being hooked up to monitors to test her Oxygen and C02 levels. Both Jeff and I slept with her in the sleep lab that night so we could be there if there were any complications. The test seemed to go well but we have been waiting for word from the doctor since then.
The doctor called us today to let us know that Kayla passed the test with flying colors and no longer needs to be on the ventilator! As of tonight, Kayla will be able to breathe on her own all night without any assistance. It will be so sweet to see her in her crib without all of the tubing and noises of the ventilator to keep her awake all night. We are pretty sure that she will sleep more soundly than she ever has before. Hopefully, Jeff and I can get some sleep to but it’s a big night for Kayla and we are both a little nervous right now. This is such a huge milestone for her and it will open up a world of new things for us as a family. Who knows, maybe traveling will be in our future sooner than we think.
Kayla will still have the trach tube in most likely until after next winter but we can live with that for now. We no longer need to travel with the ventilator or backup marine battery so getting around will be a lot easier now. We will still need to carry her suction machine around to help keep her secretions under control but it's relatively small so it’s not a big deal. We will also still need to carry her emergency travel bag with us at all times until her trach is able to be removed next Spring.
Kayla has been getting stronger every day and is almost able to sit up on her own without support. Her head control is getting better every day but she still gets tired and can't hold her head up for extended periods. She is eating really well and still does not need to be fed by her G tube. Kayla’s Gastroenterologist feels that with her continue weight gain that she will likely have the G-Tube removed in a few more months. Kayla has slowed down her growth a little which is good since she was gaining a pound a week for a while there. At that rate she would have been 30 lbs by her first birthday. Yikes! As of yesterday, Kayla weighed 20 lbs. 8 oz. and is 30 5/8 inches tall. Kayla just passed her 9 month birthday but is already in 12 to 18 month clothes. She looks more like a toddler than an infant these days.
Kayla began teething about 4 weeks ago and is currently cutting 5 teeth at once. She is really fussy from the pain but is able to get some relief from teething rings and orajel.
Kayla has been receiving weekly physical therapy and child development since we have been home and starting in June she will begin an aqua therapy program at a heated therapy pool run by Easter Seals. We will only be able to get her in the water from her chest down since she has the trach which is a direct airway into her lungs but every step forward is a move in the right direction. We are hoping to get her into our pool this summer too, hopefully by her first birthday.
Well, that’s all for now but we will be in touch!
Love to you all,