Tuesday, October 7, 2014

A Much Needed Update

Hey all!

It has been a while since we last posted because it has been a very hectic month. We have been slowly getting ready to move and dealing with a number of things that have arisen in the last few weeks. As of Friday, Max is officially 8 months old! We cannot believe how fast time is flying and how big he is getting. He is beginning to make the shift from baby to little boy and we have mixed emotions on this. Despite everything, Max has been doing fairly well. We have been dealing with a number of complex issues involving his medication cocktail, weight loss, and a nagging low-grade fever. However, throughout all of this we have hit some exciting milestones like Max's first tooth and his first solid meal!

Since the biopsy, Max has had difficulty gaining weight. He was stagnant for a couple weeks and then over the last week, he actually lost a little bit. A drop is significant for a baby his age and his already low weight makes this even more concerning. During this time, Max has also had fairly unstable levels of Tacrolimus, his anti-rejection/immunosuppression medication. After the biopsy, we found that his Tacro levels were dangerously low, which puts Max at an increased risk for rejection. Based on his age, weight, and medication levels, we increased his dosage to a more appropriate level and he responded well for about a week. After a routine blood test, we found that Max now had dangerously high levels of Tacro, which has the potential of producing a number of serious side effects including extreme dehydration and kidney failure. So, we had to completely stop giving him Tacro for a couple of days to let those levels drop a bit. Since then, it has been a medication roller coaster and we are having to constantly monitor and alter his levels every few days. We ended up lowering his daily dosage to pre-biopsy numbers, yet the levels have still been far too high. Max has had an extreme increase in blood tests, which is difficult on the little guy and only makes it more difficult to gain or maintain weight since his body will spend time reproducing lost blood rather than focusing on growth. The physicians are unsure exactly why his body is reacting this way, but we hope to get this under control in the coming weeks as we go in for multiple appointments. We may be changing the suspension of his medication to see if that changes things and makes his immunosuppression a little more stable.



On top of everything, it has been time for Max to start getting the immunizations he is able to get, which is really good, but slightly bad timing given everything that has been going on. He got his flu shot last week which has given him a small fever and diarrhea for the last few days. We have had to put his magnesium on hold to prevent him from getting dehydrated, which would lead to an immediate hospitalization. He is doing far better now and hasn't had a concerning fever yet today, so we are hopeful that his reaction to the flu shot has passed. We will go in for another blood test tomorrow morning to test his Tacro levels and also to ensure that nothing else is going on that could be the cause of this fever. We will also check his magnesium levels to make sure that those haven't dropped after being off of it for the weekend. These complications illustrate how delicate Max's medication cocktail really is: one change of a medication alters and affects everything else he takes. It can be very frustrating at times.

Every day. 


Despite all of these hiccups, Max has been his normal and chipper self. A couple days ago, we had our first successful solids introduction where he finished all of his sweet potatoes. Up until this point he has been completely disinterested in solid food, but a couple days ago he had suddenly perfected his eating technique, appetite, and acted like he had been doing this forever. He's continuing the trend with more successful downings of sweet potatoes; I think we may have found his first favorite food.

After WEEKS of painful teething, irritability, and a related low-grade fever, Max FINALLY sprouted his first tooth! We were very excited when it finally broke through and at least gave us a bit of peace knowing that all of his other symptoms for the last month (grumps, fever, etc.) were more than likely completely related to this problematic first tooth. It seems like he has another one working its way through, so we will see if he gets another in the coming weeks.

These are the important parenting questions. 

Between everything else that has been going on, we met with a new physical therapist to check in on Max after the biopsy and make sure that he isn't falling too far behind as a result of surgery and a long delayed start of tummy time. We absolutely loved this new therapist, so naturally we found that she is leaving her job at PCH for another one closer to her home. We are going to see another therapist at PCH, but also hopefully give one in Flag a try once we move back. Max is on the cusp of falling behind in terms of gross motor skills. He refuses to spend time on his tummy and has found that it is more productive and interesting to simply roll around and lay on his back. It's not that he can't hold his head up from tummy time, he just chooses not to because it is far less interesting than starting at the fan and everything else above him. Instead of pushing forward, which he can do if he tries, he has found that it is easier to simply roll and pivot from his back.

Sometimes, he is too smart for his own good.

However, his fine motor skills are developmentally advanced. He can grasp small objects and has incredible depth perception, which is a really good sign. Even with some of his physical milestones starting to become delayed, he is sill ahead of the curve with his mental development.

Max has grown some hair in the last month...


This week we have our monthly clinic visit and a checkup/vaccine appointment with the pediatrician so we will have more to update at the end of the week. We are slowly starting to move back to Flagstaff and made our first big trip with stuff over the last weekend. We are really excited to get back home and live somewhere we can actually take Max outside--well, after cold and flu season that is.

Everyone is gross.


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