Alex and Maddy

Alex and Maddy

Friday, July 19, 2013

A Week of Appointments

I am worn out! Alex and I had appointments everyday this week. So here is a quick synopsis on each appt!

Physical Therapy Evaluation- As I mentioned in my last blog, we have been "forced" back into PT. Tuesday we had our evaluation. It was very different then what we were expecting, but we figured out at the end of the appointment that they had scheduled us in the wrong clinic! However, the evaluation was done. Alex's hamstrings are VERY tight. To the point of being concerning and the PT mentioned having to look into botox if we can't make any improvements. You should be able to stretch your leg when lying on your back to 0 degrees or straight. Alex can only get his to 50 degrees. Not good! The therapist also noted his poor endurance. Because we were evaluated in the sports rehab clinic instead of the neuro-developmental clinic we are waiting to hear back about appoontments and recommendations.

Hematology- I continue to be SO happy with our new hematologist locally. She is so easy to work with. She was happy with how Alex looks/feels. She saw a huge improvement over last appointment where we were on the verge of a transfusion. We have a good plan in place for following his blood counts and what to do when he drops below transfusion level. At our last appointment, Alex's iron counts were low and she was wanting to start iron supplementation, however, GI said no because of how hard it is on the GI system and the fact that Alex had iron build up in his liver cells when he had his liver biopsy. If his iron levels are still concerning she is going to talk to Dr. O (GI) again and also order a special scan (similar to an MRI) to look at his liver and see if he still has iron stores there. All in all this was an easy appointment.

Endocrinology- We also saw our "new" endocrinologist. At our first appointment his bedside manner left a little to be desired, but I could tell he was knowledgable so I wanted to give him another chance. I am really glad I did. We had a great appointment this time and he has some exciting ideas to try!  We both agree that while we have some ideas on why Alex struggles so much with hypoglycemia it could be from a number of causes and it is not worth stressing his body trying to figure out why. We both agreed that it is sad that Alex feels so bad if we try and give him any time unhooked from feeds. He always winds up shaky, sweaty, and pale with really low blood sugars.  This doctor would really love to be able to give Alex a chance to be a little boy without paying a price. We are going to do 2 separate challenges outpatient with a medication that "should" bring your blood sugars up. The first test will be for an hour with blood sugars and labs chacked every 10 minutes. If that is successful, we will try a similar test for 3 hours in hopes of buying Alex 3 hours a day unhooked. We will then add the missing calories to his TPN. This medication is one that we tried and were not successful with in the past, but it has been 7 years. The doctor is not too optomistic because it didn't work in the past and because of Alex's liver disease. The downside if it works is Alex would have to get a shot everyday, but my brave boy says "who cares". I am just so grateful that these doctors are trying to help us improve Alex's quality of life!

Psychology- I really have nothing to say here except that our psychologist is incredible. She has worked miracles in my child over the past two and a half years. Their relationship is one built on mutual love and trust and she has been such an integral part of Alex's well being. We are so thankful for our beloved Dr. Kristy. When she first started seeing Alex he was reeling from Samuel's death. He was sad, angry, and fearful. He was struggling with debilitating anxiety and OCD. Anyone who met him today would struggle to find any remnants of that anxiety and OCD.  Dr. Kristy deserves so much credit for the changes we see . She has also been invaluable to me when I have been unsure of how to help Alex handle some of the hard circumstances of his life.

OB/GYN- To top off the week we saw our OB this morning to check on little Miss Madelyn. Alex was very upset that we weren't going to get a picture this time. He is spoiled since we've had 4 ultrasounds already. Miss Maddy checked out great. Her heart sounded great. I am still measuring too small, but this time I am only 4 weeks too small compared to 6 weeks too small last time.

I think that about sums it up. We are glad to get through this week for sure. We are hoping next week brings less appointments and more fun!
Ali

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