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

Appointment Update

This was a somewhat easy trip to Houston logistically. We only had two appointments scheduled. We arrived on Monday and got to spend some good quality time with friends.

Tuesday morning we saw Dr. Koenig. I really didn't feel like I had a lot to discuss with her. Our appointment took longer then I expected because she did have some things to discuss with me! We spent a good chunk of the appointment talking about Maddy and what needs to happen when she is born. The remainder of the appointment was spent discussing Alex's GI/Pulmonary probelms which are our biggest concern right now. Dr. Koenig also felt like for the first time in Alex's life we are not dealing with any day to day crisis so as much as possible we are going to try and let him "feel good" for a few months without too many major changes. We did increase one medication as Alex is complaining of headaches about 4 times a week.

Tuesday afternoon/evening was again a fun time of fellowship with friends. Alex loves his time with his mito friends so I love that we get to have these fun times interspersed with aapointments. Wednesday we saw neurosurgery. He confirmed once and for all that Alex definitley does not have a tethered cord or chiari malformation (the 2 most common causes of a syrinx).  That means that the only treatment option is a surgically placed shunt in his spinal cord. The Dr. felt like at this time the risks of doing that surgery outweigh the benefits of allevating the symptoms that may or may not be caused by the syrinx. ( Because of all of Alex's underlying diagnoses, it is impossible to say what is caused by the syrinx). He does however want us to follow up with some more testing that we have not done in a few years. I am very happy to take surgery off the table for right now!

During both appointments we were encouraged/told we needed to resume Physical therapy which we had been on hiatus from for about a year. So I have scheduled a new evaluation to get that process started. Our next few weeks and months are chock full of appointments (and fun) as I try and get all our ducks in a row before Maddy arrives in November. Our hope is that we can then have some down time and just enjoy our new little girl until after the New Year.

I am so grateful for doctors and nurses (and other staff) who continue to help us navigate this crazy journey to give Alex the best life possible. I am thankful for friends and family who are there to take our mind off hard times and laugh with us, those who shoulders I turn to to cry on when necessary, and those who listen as I try to process through so much medical information on a regular basis. I am so blessed to have so many prayer warriors who pray for my sweet boy on a regular basis.
Most of all I am so lucky I get to be Mom to the most incredible little boy who inspires me everyday with his love of life despite the hard life he has been given. I am amazed by his laughter in spite of chronic pain. I am awed by his spiritual devotion and love of God. I learn from him daily.
Ali

A Crazy Week!

This week has been crazy and full of lots of excitement, both good and bad. Since our beach trip, Alex and I have jumped headfirst into our fourth grade curriculum. We are getting a jump on school so we can take a nice long break when Maddy arrives! So far Alex really seems to be enjoying our new curriculum and he has been working hard for me. he is happy to be back to exclusively homeschooling and keeps insisting that when Maddy is old enough we have to homeschool her.

We also celebrated Alex's birthday a little late with his best friends. We had such a good time swimming at the pool and just enjoying time with good friends.

We had planned to spend July 4th enjoying the fireworks with our friends as has become a tradition through the years. This year we were going to head to Fort Worth as their display was suppossed to be especially good. As you can imagine we hit the traffic expected with a major city fireworks display. As we were in traffic trying to get to the parking lot Bruce's car began to overheat and we had to bail on the fireworks. I felt so bad for Alex as he was so sad to not get to spend the evening with his friends. He is such a trooper. We made the best of it and walked down the block to see what we could of the dispay. Mia was not so fond of the fireworks. Poor Girl!

 

As for medically. We have had a few appointments here, but overal Alex is doing really well. We are still trying to get to the bottom of the pulmonary issues adn how we can best help Alex. We are heading to Houston this week for an appointment that has me on edge to say the least.  All the way back in 2008, we discovered that Alex has a syrinx. Simply speaking, a syrinx is a collection of fluid in the spinal cord. In Alex's case it is very large. (For my curious, medical friends, it goes from C4 through the entire thoracic spine). We have done repeated MRI's to follow this and try and determine if it is putting pressure on the spinal cord and causing any of Alex's vast array of symptoms. It was decided a few months ago that it was time for us to consult with neurosurgery. I am very hopeful that neurosurgery just wants to continue to follow it as the alternative surgery is very scary. I will update next week once this appointment is over.

 

As for me and Maddy, we are doing good. Maddy is getting bigger and stronger every day and Bruce and Alex have both been able to feel her kick several times. She is quite a mover and squirmer and I feel her all the time! I am 22 weeks now and getting more excited to hold this little sweet pea in my arms in a few months! Alex is so excited and sweet. He has begged to get rid of his bed and get twin beds when Maddy is old enough so they can share a room. He has also informed me that he will be the last one to kiss her and tuck her in each night. My Bug has such a sweet, kind heart and it is already showing through when it comes to being a big brother!

 

My car needed service, so yesterday Bruce took it in in the morning, He was gone almost all day and came home to surprise me with the news that he had bought me a new van! We don't have it quite yet, but should by the end of the week. Very exciting! I will have to post some pictures once we get it.

 

I think that is all fro npw. Thanks for keeping up with us!

Ali