Hello Again our second home was what I thought when I walked through the doors of clinic on Wednesday. I felt comfortable for what the day looked like ahead. My only concern this visit was weight. This was our first clinic visit post allergy diet alterations and I felt certain that R's weight would reflect more blueberries vs goldfish... We arrived right on time and we walked on through the office like we owned the place. R was happy and smiling at all the nurses through his mask. They directed us to room 13 where we would stay for the next 3ish hours. This room was decorated in various animals and had a frog poster on the wall behind the observation table covered in crinkly paper.
Once we were settled, a nice lady entered and took our general info and I signed some paperwork. She asked about R's recent health, insurance, living arrangements, the weather, and etc.
Next, we were taken to another room to retrieve vital signs. R happily covered his face with a blankie and down the hall we went. (At CF Clinic you either must wear a mask or cover your face with a blanket at all times when you are not in your room.) R did great with vitals and thoroughly enjoyed the bubbles that the nice nurse was blowing.
Head Circumference: 48.5cm
Oxygen Saturation: 100%
Woohoo! He didn't shrink was my initial thought. All of his vitals looked great. What a perfect start to a clinic appointment!
Shortly after we arrived back in room 13 pharmacy entered. He checked our refills, asked us about the new allergy meds, and we discussed diet changes post allergy discovery. Pharmacy consult, success!
So far so good! Man, this appointment is going off without a hitch. R was doing great and we spent our waiting time blowing bubbles and dancing of course!
PT came in a few minutes post dance party. She asked how R's mobility was going and about his gross motor skills. I was so pleased to inform her that he was doing great and developing phenomenally. She is always such a joy to see and converse with.
Dietary came in for a visit and questioned us on our new diet and overall new life. She was happy to see R's weight gain and informed us to keep on keeping on. She gave us some samples of super high calorie prescription juice boxes. (She also gave us a script for a prescription if he liked them) Our new diet consists of lots of avocado, meat, veggies, rice, wheat free/dairy free waffles, and fruit. I spend hours on a grocery trip ensuring that every ingredient is allergy free. Numerous stores and hours later we have found a few items for the week. I am hoping to soon be able to navigate through the store grabbing all allergy friendly foods. But for now I will just make a day out of a, what should be simple, grocery trip.
The ever so lovely respiratory therapist made her appearance next. R is always so excited to see her because she always makes her consult enjoyable. Today we talked a little bit about R's progress with the Aerobika. Which is doing pretty good. We strive for 3 strong breaths two times a day. Some days he will knock them out quickly and other days it can be a real battle. She was very pleased with our successes. I asked her a few questions about R's vest system. Recently his vest machine has been blowing hot air (which according to another blogger can be a sign that your system is suffering from a mechanical issue.) She was unaware what the hot air could mean and was going to call the company for us. I always talked to her about when it would be time to get a new vest for the incourage system. Over the past month or so R has grew in length and his vest is not covering below his naval anymore. She gave him a quick measure and he is ready for the next size. She said that around ever 6 months it should be time for a new vest. R's first vest looked like the galaxy, this time we picked a camo one which came with cool stickers to decorate his system. R seemed very excited to get some new gear. In order for the vest system to work properly fit is key. We are keeping his vest sessions at 2x 30 min daily. R does great with his vest and we should receive his new equipment next week. Big shout out to our Resp. Therapist for all of her help!!
Another person who deserves a huge shot out is our next visitor. When you live with a chronic illness you need help keeping it all together. Scheduling appointments, dealing with insurance, and helping out with the society can be overwhelming. Thankfully we are blessed to have a nurse coordinator who takes care of all the details and ensures that R remains in pristine condition. She is so resourceful and supportive I am so thankful to have her guidance throughout our journey.
Second to last was the pulmonologist. He was overall pleased on how that our appointment had went so far. He was glad to see the weight gain and the appetite gain since the allergies were discovered. He gave R a listen and said he sounded wonderful. He was amazed by R's ability to swallow his enzymes whole and successfully use his Aerobika. He had zero concerns at this time and he went ahead and scheduled R's next bronch for over the summer.
R is doing great health wise and I am so beyond thankful. He is adjusting well to our new diet and is happy to try new foods. Since we have cut out wheat and dairy his appetite has drastically went up and that is such a blessing. His skin is clearer and his BM are where and how they should be. He is doing so great in all aspects of his life. R is beginning to walk across the room, point at items, dance, sing, and drive his car. His fine motor skills are doing great and he is still the happiest guy in the room. He is so full of joy and happiness it is contagious. His smile can warm any heart and light any room. He is strong and brave and ever so cautious. I am daily amazed by him. He is the joy that my heart always wanted. He has the strength that I always dreamed of having. He has a heart that I envy and a mind so pure. R is the love and my life and the breath in my lungs. I will happily spend my whole life being who my son needs me to be. I will be a fighter of CF. I will work to find a cure. I will pray daily and find knowledge in the scripture. I know my God has a plan for my child and I see it in work every day. I am so thankful for my life...
R you are my dream come true and I am so thankful that you had such a great appointment. I loved blowing bubbles with you and being your dance partner. I am so sorry that you always have to get throat cultures I am sure that is an uncomfortable feeling but you take it like a champ and I admire your strength and courage. I always laugh when you smile at the nurses and cry once they come into the room. You also make me giggle when you get nervous and stick your hand down my shirt trying to nurse so that no one can take you from me. You are very smart and know that if you are nursing no one can snag you from my arms. You are such a bright little fellow and I had a great day with you today. I love you so much that I can describe and I promise that I will never let CF define you or your life. CF is just a part of your journey and we will battle it together... I will never leave your side and you will never leave my heart. I love you R, my flawless son.