Survival mode. This has been our life for too long. Piece by piece. Step by step, we are beginning to pull our lives together and form another normalcy. I won’t even lie to you …..my last Christmas tree just got taken down, newborn pictures of Jeren just filled the empty frame hanging on the wall, and my wedding shoes finally got sent to Goodwill. Living on the edge is difficult and so is reinventing your new normal- because you always have in the back of your mind from past experiences what could happen in a split second. Today, Jeren’s eye shows infection and his nose is stuffy and runny. I keep swallowing away the thoughts of struggle that usually preside after this part of the cycle. You see, the human mind isn’t very forgiving. Hearts hold scars. Fears remain fears just hidden under layers of hope. Faith battles between both spectrums encouraging us to let go and let God; reminding us where Jeren’s Journey began and how far we have come; giving us the strength and more importantly the courage to keep living life without fearing the unknown. God has that part all taken care of. We just need to keep the Faith and pushing forward. I have found myself wondering if I really should have unpacked the “hospital suitcase” we keep on hand. This fear of the unknown keeps me edgy. I have to work really hard to remind myself that the suitcase has become a symbol of struggle for Jeren and leaving it packed won’t keep the hospital away or bring us to it. Our Faith trickles through our whole journey sometimes mildly and sometimes with fierce fire. Either way, it remains the “constant” that pulls us back into check when we feel like giving up or being angry. God’s time. God’s plan. Faithful Journey. Life lessons. There are so many parts of our life that we deemed “important” and so “stressful” until we began fighting for Jeren to breathe. I am here to tell you that none of that matters. It took me a while to give it all up and witness what affects hearts now and in the future. The dust in your house doesn’t matter. The amount of money in your wallet doesn’t matter. The clothes you wear, the cars you drive, the vacations you take do not matter. Your legacy, charitable acts, your time spent with your loved ones, your acts of Faith, and your ability to forgivehelplove. These are the things that really matter and affect the person you are and the life you have. It’s nothing that should be taken lightly either. Make a difference. Fight for those you love. Believe in the power and strength of prayer. Listen, reach out, and breathe. Keep in focus what’s really important before reality forces you to. God simply has a way to remind us what we should be holding close to our hearts. It is so easy to take the simple things for granted: the breath we take, the sound of kids playing, the open space of South Dakota, family dinners, hands held in prayer, the small town attitude and the expertise of those we look up to. Our boys understand that Faith is what gives us the strength to wake up each morning. They know that together our family can fight through anything. They feel our love surround them with every word and know that we will drop everything in a heartbeat for them. Parent’s love synonymous with God’s love for us as His children. Everything is so interconnected. Take the time to feel it- see it- and experience it. You will be so thankful you did. Jeren’s Journey has taken us so many different places and connected us with so many different people. It has made our Faith stronger and our advocacy more intimate. Isn’t it strange that we are thankful for our struggles? Look where they have brought us and how they have affected who we are. We know God chose Jeren and Jaxon specifically for Justin and I. We wouldn’t change a thing. Life continues on with day to day living taking on a whole new miraculous meaning when you can’t hear Jeren breathing from the next room over. You’ll be happy to know that I won’t be “repacking” the hospital suitcase. Instead, I have Faith that God will take us where we need to be at just the right time. Keep us in your prayers! xoxox The Scheffs Health updates: Pulmonology report: The Dr. is trying a course of things to just see if a combination of interventions will help Jeren sleep without so many disturbances at night. She isn’t concerned about the sleep study numbers but is questioning the “why” his nose shuts down part. Blood was drawn for allergy testing. We are awaiting the results. He is taking 2.5 ml of Cetirizine at bedtime, Fluticasone Nasal Spray two times a day, Flovent with a chamber two times a day, 2.5 ml of Ompeprazole two times a day and Nebs when coughing. The mix of these is a flux of things to “manage” his airway the best we can. Since, starting the new plan he has slept through the night four nights in a row. In his 18 months of life, he has only been able to do this once. Last night, he was up more often but he is fighting a cold again. So, we are very hopeful Pulmonology with ENT will be a key to Jeren’s easy breathing. Urology report: The ultrasound of his bladder, kidneys are ureter show the R kidney has completely healed itself (YES!) and the Left side has not changed in 13 months (BOO!) The Dr. knows the left kidney/ureter is functioning as it should but is still swollen. As long as it drains properly, he does not want to put Jeren through a surgery to fix it. Sometimes, it can take 4 years for the body to fix the kidney. He will keep watching the kidney and at age 4- we will decide if the ureters should be transplanted or if it should be left alone. Pediatrician report: C-Diff is gone! Allergic reaction to the med is noted. Shots are up to date. Development and growth are normal for his age. (YES!) Infections will be discussed with ENT to develop a plan especially now, that he had C-Diff and his past with steroids. ENT: Interior of the nose/tissue looks healed and patent. Jeren’s nose is beginning to run which shows scar tissue has not closed his airway. If he develops a fever with a sinus infection- meds will be used to help him fight but if he just has drainage- Jeren’s body needs to fight the infection. If his ears have infection and the tubes drain- we use CIPRODEX in his ears unless he has a fever than an antibiotic will be started. ENT is concerned about all the eye infections because of the small airway pushing the infection out through the tear duct. He suggested we speak to Opthamology to see if the Dr. can do a surgery to open up the tear duct. We go to the U of M for eyes in August but will call Dr. Tufty here at Sanford since his eye is infected right now. Dr. Sobol ENT from CHOP spoke with Sanford ENT to discuss procedures and plan. Physical Therapy- Jeren is a quick study. PT Kris shows him a safe way to climb or go down stairs and he copies after the model. She observed that his L leg gets stuck when he gets on a chair, tries to sit on the slide or climb on riding equipment. We are using verbal reminders to get him to pull that leg out as he tends to forget about it. He use to do this with his L arm when he was a baby. We have decided that it goes back to his time in the NICU. He was always bundled in a blanket and on his left side. He would work his R arm and leg out of the blanket to be rubbed but seldom was turned to the other side. With a baby who struggled to breathe, he always needed to be faced out so we could see him- with experience and figuring out if he is L or R dominant this issue should resolve itself. Occupational Therapist report: Jeren is stringing beads, using some color words (blue and green- Jeren and Jaxon’s favorite colors). He is exploring puzzles and counting 1 2 3. He tends to have a textural issue with play dough and magnetic sand. She is amazed at his use of language. We are amazed every day at the gift God has given us through Jeren. Take the time today to experience the beauty around you. We are!
Posted on: Fri, 18 Jul 2014 04:19:35 +0000
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