Wow...well, a lot of time as passed since my last post. Unfortunately, we are still in a holding pattern about what to do with her tonsils. I have actually scheduled a second opinion with a new doctor because we received conflicting views from her ENT and pulmonary doctors that left us a little uneasy as what steps to proceed with in regards to her tonsils. So those appointments are coming up in September and October. So much and so little has happened in the past few months. Sophia has actually had to spend two more over night stays in Riley since we spoke last. Both stays were due to illness. The common cold is no friend to us. Waah. Well the first time Sophia accidentally grabbed a glass of water and dumped it down her trach and BAM pneumonia. And people wonder why I am so anal about certain things. Sophia, for a while now, loves to pretend to eat and drink. She watches her world around her to these common everyday things and she wants to belong. She insists on having something to hold or pretend with while we have a family meal. I encourage this. Under close eye. Sophia is still ONLY gtube feed. So far, any and all food that goes into her mouth goes straight into her airway...her lungs! It is unsafe for her to eat. Though, I love to watch her pretend and I know therapeutically it is good practice. I have to watch her closely and react hastily if she does accidentally take a bit or get a little bread crumb in her mouth. Her favorite things to hold and pretend with are bread and apples. These work because they're larger and solid and she can just lick them. Well, one day someone left an unattended glass of water in sophia's reach and she naturally picked it up and "pretended" to drink. This sent mommy into a frenzy and ultimately handled us in the hospital. We actually had a pretty sickly start to summer. We took Sophia to her first tumble tots class. She rocked and absolutely loved it. However, it was our one and only visit this summer because two days later she was so super sick. We made 6 trips to the doctor in one week. I'm pretty sure it was hand, foot, mouth from the mats. YUCK. We will wait until she is older to try again. These things, these everyday involvements and typical childhood interactions are what I long for Sophia to be a part of. We encourage her to do "typical" peer things, we just wish it didn't come with such precautions and worry.
We did successfully take our first family vacation this summer. It was so liberating. It was just the three of us. We took a spontaneous road trip. It first started out as a quick trip to Niagara Falls and ended up being an east coast adventure to Maine! The intentions were to start out small and close to home for a couple days. We literally packed our van full of all of Sophia's medical equipment and for our trip. Well once we were at Niagara we realized things were going really well and if Sophia has taught us anything...it is to value the moment and LIVE life. So we did. We turned east and drove as far as we could. My husband and I have always wanted to go to Maine so ours thoughts were 'we were never going to get as close as we are now" so we hit the road.We had the most amazing time. For us, it was just liberating. Me, my husband, and SOPHIA, out on an adventure. It was so nice to have that experience. To know that we CAN if we want is a humble feeling. The best thing of all was Sophia was perfect. She was patient and happy and HEALTHY. We got home and were already talking about our next vacation. The next time we will plan a little more lol.
So I started back to work a couple weeks ago and Sophia decided to pull a 180 and got really sick out of nowhere. Literally, she went from a 99.9 fever to 105 in two hours after Tylenol. Mommy and Sophia made an emergency trip to the nearest ER and they then transported us by ambulance to Riley. Long story short, she went through a few blood tests and through several IVs to find out it was an infection from her trach. By infection I mean, she doesn't have the more defenses we have to filter out all the bad germs because of her trach. We luckily got to go home after a one night stay. We technically, two nights but neither of us got much sleep Saturday. In fact I was awake from Saturday at 5am until Sunday at 230pm before Daddy was able to come leave me for some rest. Oh our life is always eventful.
I thing that covers the biggie stuff in the past coupe months. Sophia of course is awesome as ever. We are dabbling in potty training. She will go when we take her and she will sometimes ask to go but we are still having some accidents. She can also now tell you at least one word that starts with each letter of the alphabet and vice versa. Like what letter does mom start with and she says M and we can ask what is a word that starts with C and she will say cat. Our therapists also say she has the handwriting skills of a 36 month old. She can draw circles and cross T's. She is also a be help around the house. She helps unload the silverware from dishwasher, loves the load the wash, will put her clothes in the hampers and so on. I must say it is very nice that she inherited mommy's appreciation for tidiness. I can really never brag on that girl enough.
