Rough few weeks

 I am not going to lie, this past few weeks has been a little rough. But even on the days when things don't go our way or we have more questions than answers, we know we are held and loved. So we can always find the beauty and the joy regardless of our circumstances.

Alex's port is still leaking, but he feels okay so we are just trying to march along until Fall break as he hates to miss any class time. He is loving his classes this semester. His professors are amazing and he enjoys all of them. He has made some new friends and continues to enjoy all of the "extras" that college has to offer. I am so spoiled that my boy loves to share all the things so I get an inside view into all he is learning and doing. Our relationship has always been close and special and even college has not changed it! This week Bruce and Alex enjoyed a soccer game and he went with his Honors classmates to the symphony. I continue to see so much improvement in his organization and maturity and especially his time management as he has learned to balance work and fun and medical demands and get it all done. 

Alex and Bruce taking in a soccer game

Alex and Sam, the Assistant Director of the Honors program and one of Alex's favorite people

This is his second symphony and the Opera House is gorgeous

Oh my poor Maddy...it has been really hard for her this past few weeks. Her kidneys are not working properly (due to her Mitochondrial Disease) and it is taking a toll. She has had all of the symptoms of a UTI, including blood in her urine for most of the past 6 weeks. We have done multiple urine cultures and all but one have come back that it isn't a UTI. So our amazing pediatrician has referred her to nephrology (but can't get in until November) and has continued to order more and more testing. As we are putting the pieces together we know that she hasn't had a "normal" urinalysis since April. During this same timeframe we have watched her endurance decline drastically and fatigue and feeling unwell take over. She is only lasting about 45 minutes for each lesson at the barn (she used to ride 2 hours and would do more if wee let her). She has also had to miss her last two dance classes because she doesn't have the energy to do any more. Dr. Benzick and the nephrologist have been in communication and they believe she has Renal Tubular Acidosis which is somewhat common in Mito. basically, the kidneys are unable to remove acids from the blood into the urine. This makes the blood too acidic and the urine too alkaline which leads to the formation of kidney stones. All testing up to this point supports this diagnosis and an ultrasound yesterday revealed multiple kidney stones. The acidosis is what causes the fatigue and headaches she is experiencing. Unfortunately we need to complete one more test before we can confirm this diagnosis and thus begin treatment. I am so very grateful for Dr. Benzick as he truly has walked beside me and supported my kids from day one. I could not ask for a better doctor to be there for my kids and pick up the ball when we need him to. I am also thankful for Mandy and Joli who love my girl so well and have been extremely flexible as we try to get her feeling better so she can enjoy all her favorite things again! And our best boy, Quigley....he has been one of the few sources of smiles and her time at the barn has been the only time she can distract herself from the pain and fatigue she is dealing with.

In the midst of all this, I have also been undergoing some more testing as some hope of a diagnosis came from the most unexpected of sources...an allergist. I have struggled with awful allergies all my life and finally decided I needed to see an allergist after many years since my last appointment. As I gave him a history of my allergy struggles, but also filled him in on some of my issues over the past few years, he became convinced he  may have an answer. He believes i may have either Systemic mastocytosis or Mast Cell Activation Syndrome both of which can explain the puzzle that hasn't made sense. We are still waiting on the mast cell testing to come back, but in the meantime I had to go off all allergy meds for a week to do allergy testing. My PSA for the week is DO NOT STOP ALLERGY MEDS DURING RAGWEED SEASON!!!! I was a hot mess as my friends at the barn can confirm. I completed testing this week and was allergic to all but 4 of the 56 things they treated me for. So I will be restarting allergy shots soon.

At this time I would ask for prayers for Maddy to feel batter and get back to living her best life and for Alex's port to behave until we can  get it figured out.

Thank you for walking beside us and supporting us during the good and the bad times.

Ali 

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