Medical Update

 An update on all of us!

First up is Bruce. He had his six month scans the last week of December. He has had multiple calls as no one could locate the results. Luckily they finally found them and he saw both his oncologist and nephrologist this week. He continues to be in remission from his colon cancer. He will stay the course with labs every three months and scans every six months as they continue to monitor several suspicious spots on his lungs, kidney, and pancreas. Bruce loves his position as a Construction manager for 7-11 in the fuels department. 

Overall, I am doing pretty well. I have had a few flare ups of my autoimmune stuff which comes with some significant pain. We continue to adjust medications and in between flare ups, I am feeling pretty good. I stay crazy and busy between helping Alex prepare for college, teaching Maddy three days a week, getting her to all of her extra curricular activities, getting the kids to all of their appointments, doing medical stuff at home and keeping the house running!

Alex is feeling much better. His colitis flare up seems to have responded to the medication and he is back pretty close to his baseline. This is such an exciting time in his life and we are so grateful he is feeling better to enjoy it. He and I have made several visits to Dallas Baptist as we continue to meet with different departments to try and ensure a successful first year at College. We have not heard yet if he has been accepted into Stone House, the housing/discipleship program he interviewed for. We expect to hear something by the end of the month. We are busy applying for scholarships and working on his ability to do all of his medical care independently. IT IS A LOT! 

Maddy Moo is the busiest of us all. She works hard at everything she does. She continues to do extremely well at school. The schedule, small classes and kindness make Trinity Prep a perfect fit for her. We have enrolled her to continue on next year for fourth grade. She has the sweetest class of 12 kids (10 girls and 2 boys) and they are all friends and enjoy being together. In addition to ballet and art, Maddy decided to add Tap with Mrs. Joli this year! She is really loving it and anxiously awaits Thursdays for her time dancing and being creative with Joli. Her very favorite place remains the barn. She loves everything about it. The people, the horses, the hard work, the fun. She continues to learn new skills and is able to do more and more independently each week. She is working hard as we have a big show coming up in March and she will competing in more classes than normal. 

I have the most medical updates on her as we sort through some issues and have had several appointments. We saw her knee surgeon this week. This appointment was a bit of a mixed bag. Let me back up a minute for those who don't remember what is going on. About 2 years ago her left knee started dislocating every single time she straightens her leg. We saw several doctors and eventually wound up with the top knee surgeon at Scottish Rite. Despite popping out and in hundreds of times each day, the dislocations don't generally cause her an increase in pain (her knees and ankles always hurt). Several times a year, her knees will dislocate more "forcefully" and is VERY painful. When this happens she can't walk for several hours and limps for several days. The surgery she needs is very extensive. It is not arthroscopic. It is an open surgery and involves both bone and ligaments and screws. So back to our appointment. The surgeon had told us from the time that we started seeing him that we needed to try and make it to 10 years old before doing surgery. Otherwise there is a very high likelihood that we will need further surgeries in the future. We discussed timing of when best to do the surgery as Maddy will be 10 in October. If we do the surgery when she is 10, there is about a 20% chance of needing further surgeries. He told us if things stay exactly as they are right now, if we can make it to 12, the possibility of needing further surgeries drops to under 10% and never gets better than that. So we have a new goal as far as age. BUT if at any point going forward she starts having more pain, more painful dislocations or swelling we need to do the surgery right then. The bad news we received was that she will likely also need surgery on her right knee. The good news is that originally we were told she needed to stop horseback riding for 4 months. I explained that she rides in a therapeutic riding program and we have the ability to offer extra support and modifications. He agreed that she can get back on horseback after 8 weeks with some very strict rules and modifications. Before I get bombarded with questions...yes we have tried other interventions...we have done therapy, bracing and she has been seen by no fewer than 5 doctors. It has been made clear that surgery is a guarantee. it is a when not an if and things will only get worse as she gets older and bigger. 

The other thing we have going on is some  bladder/kidney issues. We have know there was some issues, but they got much worse in November. After ruling out the easy causes, we were referred to urology. We saw the urologist in January and she did determine something is not right, but not exactly "what". She started a medication as we continue to do testing. Unfortunately the medication has not made any difference and it is really hard for Maddy as she is in the bathroom about 3-4 times an hour when she is awake. We have a kidney ultrasound scheduled at the beginning of March and a follow up. If that still doesn't provide answers we will do further testing.

I think I have you all caught up!! We would ask that you pray for continued remission for Bruce, less pain for me, excellent health for Alex and for answers for Maddy so we can get her some relief. Thank you for all the love you surround us with!

Ali

Update on our Crazy Week

 What a crazy few weeks it has been!

First let me start with an update on Alex. The good news is that he is starting to feel a bit better. While he is still losing some blood due to his colitis, it has slowed considerably. The medication seems to be working in this area. We did get bloodwork done Monday morning and while his blood counts were a little off, it was not to the level we feared. The bloodwork also gave us some idea of why he was feeling so bad. His blood sugar was the lowest we have seen in years (and doesn't make sense because he gets IV fluids with dextrose around the clock. He also had some electrolyte levels off which we were not as shocked about because a medication he needs is currently on backorder. The doctor is likely going to make some adjustments to his TPN (IV nutrition) due to these results. 

This year has had a rough beginning from a medical/insurance standpoint. We had an insurance change and both kids have been without necessary medical interventions while we find new suppliers and/or get prior authorizations. I have no doubt that this has not helped Alex and has been extremely time consuming and stressful for me. 

Then to really put me over the edge, my car check engine light came on Tuesday night. My car is 11 years old and we knew at some point we would need to replace it, but we were hoping to hold on a bit longer. Unfortunately after some investigation, the repairs necessary were going to be around $500 and we have to make a trip to Houston at the end of the month for appointments and were going to need to rent a car because we didn't feel safe taking the van that far. All of that to say much of this week was focused on trying to find a car that would work for us at a decent price. No small feat in this day and age. We are so blessed that we had some friends help us locate a good deal and we have a new vehicle as of this afternoon. 

For those of you who didn't see on Facebook, Alex felt great about his interview last week. We will know if he is accepted into that special program/housing by the end of the month. It has been fun to watch his excitement grow as attending college becomes a reality. We also got him registered for Orientation in may!

Our sweet Maddy Moo has been busy with school, ballet, tap, art, and of course horseback riding. She is hard at work preparing for her next show in March. 

We would ask for continued prayers for Alex's health, his college plans, and resolution of our insurance challenges.

Thank you for being our village!

Ali

Health Update and Prayer Request

 Thank you to everyone who answered my call to join us in prayer last night...I hate vague posts so I apologize, but Alex is 18 and I wanted to know how much he was comfortable with me sharing. I only told our family and a few of my closest friends last night what was going on.

So the very quick explanation is that he is having a pretty severe flare up of colitis with bleeding. What that means and what the next little bit looks like is a bit more complicated, so bear with me as I try to explain this. In 2017,  Alex had his ileostomy surgery. Over the next several years he had multiple severe flare ups of Diversion Colitis. The severe pain and GI bleeding is what led us to move forward with a total colectomy in 2020 (Removing his whole colon, leaving only abut 4-5 inches of colon/rectum left) They leave this "rectal stump" because the surgery to remove that is horrific and very often healing is a major issue. However, leaving that bit of colon means you can still have diversion colitis in that area. Alex has not felt well all week. I have made him take his temperature multiple times and even joked that an ambulance ride in the ice storm was not really what I had in mind for the week! His Temp was fine, but he felt pretty bad and required extra stress doses of his steroids all week. He was having some bleeding and pain, but nothing alarming. Fast forward to yesterday when he started having much more bleeding. Unfortunately there aren't any good treatment options for this. Here is where it gets a bit more complicated/concerning...Alex was transfusion dependent for most of his life. He could not keep his blood counts up. As his health has stabilized his need for blood transfusions has diminished. His last transfusion was in 2020 after his surgery and he had a life threatening reaction called a TRALI (Transfusion Related Acute Lung Injury). Those of you who have followed our journey probably remember much of this. We wound up in the PICU struggling to keep his O2 Sats up on 14 liters of high flow oxygen and very close to being put on a ventilator. Alex has been anemic over the past few months, but the decision was made to try and give iron infusions to try and get his body to bring up his counts without a transfusion. We completed two of the three infusions, but missed this week due to the ice. So as you can see we are holding in a precarious balance right now. We are at home. Short of giving blood there isn't anything they can do at the hospital. Alex has started a medication to try and get the colitis under control. If he declines we have to head to the ER. If he is okay through the weekend, our GI has asked that we check back with him Monday to figure out what to do next. Hopefully, you made it through that lengthy explanation and have an idea of why we desperately need prayers right now.

Alex is the bravest, toughest human I know. He goes through more than most could imagine and he somehow manages to do it with joy and a love for life that few have. If you have had the privilege of meeting him in person than you know his smile and his personality are completely infectious and he makes an impact on everyone he meets. So in true Alex spirit instead of spending today at home or in the hospital, we are heading to DBU to interview to get into a special housing/mentoring program that he wants to be a part of next year. So as you are praying for his health, please pray for this opportunity as well.

I don't know what this day, or week or year hold for Alex, but I know whatever happens we serve a loving God who has walked beside us every step and has used Alex for his glory every day of his life and I have no doubt he will continue to do so.

Thank you for your prayers.

Ali