September Update

Hello, everyone.  Yesterday Donavynn had a few other appointments to assess how he is doing.  I posted a brief update on his facebook page but thought I would give a more detailed update here as it has been awhile. 

His first appointment was with dermatology.  He has always had eczema but now with the onset of puberty he has new issues.  Thankfully, they are all mild and easily managed.  His birthmarks all look good and have not changed.  After that, he had a follow-up appointment with ophthalmology because six weeks ago he had some issues with dry eye that they wanted to be treated pretty aggressively.  He was getting artificial tears four times a day and a moisturizing ointment every night.  He despised all of it but as usual, he did what he was told.  Thankfully, this has resolved so he no longer needs the ointment at night and can cut the drops down to 1-2 times per day.  Next was off to dental after a nice stop for lunch at Quiznos. With me working so much now and Donavynn thankfully doing well overall we don't have the time together that we used to - so our little lunch date was nice.  All looked good with dental - no cavities, but many loose teeth.  He also may need some teeth pulled later, but they want to watch for right now.  They also told us that since he's five years out and is doing well that he can start seeing a regular dentist anytime.  I suppose this is a good thing, but I can't help but feel uncomfortable with it.  He has blunted roots from treatment, so I am leery of him seeing someone who isn't used to caring for these types of patients. His final appointment was with pulmonary.  Since his diagnosis with the alpha one antitrypsin deficiency, his transplant doctor wanted him to be monitored more closely by pulmonology since he has had so many issues over the years with his lungs, full body radiation increases the risks to the lungs and as pts with alpha one get older they are more susceptible to lung problems.  The appointment started spirometry to see how things are going.  They reported that his function is down slightly.  Over 80% is normal 60-79 is considered mildly impaired and his was at 72%, luckily his CO2 exchange is still in the normal range. The doctor reported that this can happen after transplant but it is possible to improve it and get him back to normal but there hope is to at least keep him stable.  Treatment for this includes adding an inhaled steroid twice daily after his acapella treatment, increasing his acapella to twice daily with his albuterol, and since he seems to have chronic allergies they added Flonase to his medication regimen. This will take some getting used to.  For awhile he was on very few meds and needed very little assistance with things but now he has a few more to do, and a different routine to adjust to.  He has also gained 6 lbs in the last month which is concerning.  He does have hypothyroidism, but he also doesn't have the healthiest eating habits either.  For years, we were told that if he was eating, they were happy so to let him eat what he wanted.  Now that isn't the best plan because he is already at an increased risk for diabetes and heart disease.  Trying to modify his diet now without giving him a complex has been somewhat challenging.  We are trying to find healthier options that he will also enjoy, and work on portion control and increase his physical activity.  He hasn't been happy with these changes, but he understands the need.  So overall, things are going fairly well with him.  

Over the last week, however, we have been under added stress, and initially I wasn't going to share this information, and I am still hesitant to do so because I do not like to ask for help... but our options have become very limited so we are reaching out to anyone who can and wants to help.  Our roof needs to be replaced.  The years of Donavynn's medical needs have left us... well not in the best financial shape.   Of course, it was all worth it and we would do it all again.  But when your child is in therapy things get pushed aside becasue nothing else matters, and there is no time or funds for routine maintenance.  Sadly, the roof was one of those things and we recently learned that our home owners insurance won't cover the roof until it is replaced... some fine print I must have missed when we changed providers.  We weren't too worried, figured I'd pick up extra shifts and get it taken care of early next year.  This last week or so we have found 2 leaks from the roof with all the rain we have been getting... one in the dining room, and one in Donavynn's room. The roofers who have been here have informed us that we may see more soon due to the poor shape of the roof. Of course with Donavynns multiple risk factors this is extremely concerning and I have been an emotional wreck all week. We have gotten a few quotes and are waiting on more but the cost is far more than we ever expected and, we are very worried.  We do not have enough equity to take out a home equity or home improvement loan, and simply could not afford a personal loan that would need to be paid off over a couple of years so we thought that it can't hurt to reach out to our friends and family for help.  Our gofundme page link is below.  If you can help it would be greatly appreciated - no amount is too small - every penny helps.  If you can't give for whatever reason - prayers are always appreciated. Prayers that we can find another means to fix this if we are unable to raise the funds. It has been a long day, a long week - I'm exhausted so I am going to close here.  Thank you for reading, thank you for always keeping our family in your prayers!  God bless!

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