Big Day Tomorrow

Tomorrow is going to be a very BIG and very long day for Sophia. We make our first trip back to Riley. We have to be up, ready, packed, and out the door by 7am. Which means we have to be fed and have our medicines by 5. Dressed and bathed by 6. Then start the packing and loading process. It takes a good 45mins to an hour to have everything ready to transport Sophia. Packing entails: filling the oxygen tanks, breaking down, moving, reloading, and turning on gear in car, switching Sophia's vent to travel mode, getting the van packed and organized, then quickly loading Sophia and hooking her to her monitors and vent in car. Gear includes vent, two monitors, two oxygen tanks, emergency bag, ambu, diaper bag with your normal essentials plus gtube stuff for feedings, heavy battery, suction machine, double stroller, car seat and BABY Sophia:) The double stroller purchase has been the best buy I've ever made. On our first well screen appt. I had to bring the wagon. That wagon was such a pain. I had to not only take it apart and reassemble it three times. I had to pick it up and stuff it in the trunk and fight the wind from it rolling away all while trying to pack Sophia and her gear in a timely manner. As soon as we left, I started the hunt for the stroller. Monday we had another follow up with our well baby screen and lets just say that stroller is a SAINT. AAhhh so much easier. Still a little heavy and bulky but so much easier and the nurse and I managed to find a way to make all her gear fit perfectly. So once loaded, we have our first appointment at 8am with urology for an xray on her kidneys. The xray is going to tell us if her kidney reflux has improved or worsened. She has Grade 1 hydroniphrosis with a Grade 4 reflux. This could mean we simply need to continue with our antibiotic or it may require something more. After her kidney evaluation we have an even bigger appointment with our ENT doctor for a more in depth hearing screen. As you recall, she passed the standard hearing test in the left ear and referred on the right ear. However, we CHARGE syndrome it posses possible threats with hearing loss in general. BIG prayers that Sophia's hearing is ok. Again, I will take one ear if only but BIG prayers. If there is any loss, lets pray it is only minor/insignificant. The ENT at this appointment will also check out her atersia repair and her trach sight. I think I am starting to get nervous already. One these our huge appointments and two traveling that far and that long with Sophia for the first time is going to be a little scary. I am anxious to see how she holds up with the travel and how she withstands being on the HME for so long. It will also be interesting and a take to find a place to hook her up to feed. THANK GOD FOR MY HOME NURSE!!! I seriously would not be able to do any of this without her help tomorrow. After we get home from Riley, First Steps will be meeting us at our house to evaluate Sophia for physical therapy. I had told them I did not want to meet this day because of our Riley visit but unless I wanted to wait another month this was the only option they had. I am afraid she is just going to be so pooped she doesn't do well with the evaluations. However, even if she doesn't do well this will hopefully guarantee she will be getting First Step resources. Which is exactly what we want anyway. I want Sophia to be seen by therapies on the regular basics to help her continue to improve and develop as she should. I will say this, I have already seen such improvements in her already from simply being at home these past two weeks. Sophia is doing much better with transitional moving, sitting upright easier and is even starting to control her neck movements more. She is still wobbly but improving. She is doing wonderfully with grabbing and reaching for things. The other day she even transferred a toy from one hand to the other. This is HUGE people. She is also tracking very well with her eyes! All in all the ped doctor said she was very impressed with Sophia at her well screen. Of course we have some catch up to do but regarding out trach and tubes set back, Sophia is a ROCK STAR. OH, she even rolled herself on her tummy (sorta). She can roll up onto her side pretty well and the other day I step out for second and came back and she was flopped onto her tummy (sorta) the trach tubes kinda got in the way from a complete roll over. So, First Steps is going be a great resource in helping Sophia stay on the track on improvement. Needless to say, tomorrow is going to be so exhausting on all of us, especially Sophia. Please send your prayers, good vibes, and well wishes for good news on her evaluations at both the doctors and with first steps and safe and easy travels to and from. Also, say a little pray that we all manage to stay happy campers tomorrow.