Wednesday, September 7, 2011

Logan's Medical Update:

September 1st was a busy day for Logan, Neil, and myself. We had our appointment with the neurologist, but prior to that Logan went through the kindergarten special needs evaluation. The ladies conducting these tests were extremely pleasant! We first visited with an OT -- she did several tests and fun stuff with him. That lasted about an hour. Next he was evaluated by a PT -- she played ball with him, physically evaluated him, and it was pretty simple...I think that lasted about 30 minutes. Logan then fell asleep in their office while we were chatting. We allowed him to take about a half an hour nap before the final portion of the evaluation by the psychologist. This was by far the longest test of the three. It lasted almost 2 hours. He put puzzles together, played memory games, etc. At the end of the psychological evaluation she informed us that Logan is one of the smartest little guys she has ever had the pleasure of evaluating! :) This made Neil and I very happy! She then told us that she thought he is definitely ready for Kindergarten as far as his IQ is concerned!

Before I get to the next part of the findings I want to tell you a little history (if you don't read this blog regularly). I am a HUGE WORRIER. I have been so stressed and went to the doctor because I am so scared that something may happen to my children, my family, friends, etc. I seriously couldn't live with myself if something were to happen! I also witnessed a horrible wreck (I will not go into detail, but it was BAD and I got out to help) directly in front of our vehicle as we were driving to South Carolina to pick up my brother from his National Guard basic graduation...ever since then I have been super scared to get into a car, super scared for my kiddos and all the medical issues, and just have a lot of anxiety in general. When I went to my family doctor and explained this to her she told me something that I will never forget: The things we "worry" about aren't necessarily the things worth worrying about. The tragic things that happen aren't usually what that person was worrying about. In other words -- worrying isn't going to change what is going to happen. It will probably just be something you forgot to worry about that ends up happening...or something that never even crossed your mind.

I thought about this conversation when the State Fair events happened with the Sugarland Concert. I bet those innocent people never once thought that they were going to be severely injured, mentally scarred, or killed that day. I bet they were excited to be going to the concert, excited to be spending time with friends and family they loved, enjoying the "break" from their every day lives, and even more excited that they were in the front row! I bet this tragedy never once crossed their minds...never once did they think that these events would happen and change their lives forever.

Now onto the next part of our day -- we had an appointment with the Neurologist to discuss their findings from the blood work, EEG, EKG, Echo, and the 4 MRI's that he had. NOTHING was found in his smart little brain! She said that his brain looked excellent! This was a tremendous thing for Neil and I to hear. Our pediatrician and PT (not to mention Neil and I) were concerned that it was a neurological problem affecting his muscles. The MRI showed that that is NOT the case. Praise God!

We were then informed that Logan only has one kidney and they are sending us down to Riley to meet with a pediatric urologist asap. They were closed over the long weekend so I am awaiting their call today. Logans kidney is shaped like a horseshoe and located in the middle of his back...not where you would normally find the kidneys -- or in his case -- a kidney.

They found a nerve blockage in his heart and also discovered that he has a hole in his heart. I haven't done the research, but from what I understand a lot (if not not sure) of kids are born with a hole and they usually close on their own. Logan's never closed and they are only concerned because he has the hole PLUS the nerve blockage and his pulse is REALLY low. Not in a normal range...however, get this...they cannot get him in until November 16! So this tells me that his heart issues surely cannot be emergent! We will be headed down to Riley to see the pediatric cardiologist on the 16th.

Then, last but not least, there is the main muscle issue that is still present...still unexplained. Dr. K mentioned to us that she feels that he needs to go to Riley and see Dr. W who specialized in neurogenetics. She said that he will probably do a muscle biopsy and and EMG. I just got off the phone with the nurse they are trying to work in him in as soon as possible. I will keep you updated on that!

He had his OT, PT, and Speech therapies yesterday. His speech went great! His OT went well also, but she is concerned with his shoulder muscles and how he compensates when using his arms. They tried some kind of tape that for the life of me I cannot remember the name of... Anyway this tape goes on each side of his neck and down his shoulders, and he also has two pieces on his belly that go from just under his nipples down to his lower abdomen. I wish I could tell you more about that, but I don't really understand how it works!!! It is supposed to help his muscles in his tummy work harder. He wears it for 3 days then gets 3 days off. I will inform you more on this next week. His PT was still stumped. He is still regressing. His core and legs are just like jello. No matter how hard they are working him, it just isn't doing what it needs to do. His endurance is also decreasing. :( Boo!

Sorry for this LONG post. If I had updated sooner it wouldn't have been near this long, but I couldn't find the words, time, or energy to do it. The day I found out about Logan's kidney and heart I felt like I had been punched in the stomach. I didn't really even talk to my family about it because I was SO upset! I have come to terms with everything and now feel optimistic. I know that God won't give me anything more than I can handle and I know that no matter how difficult this seems...He has a plan. One day I will look back on these words and think "Man -- that was a CRAZY time in our lives!" But for now I am going to cuddle my precious boy and let him know that mommy loves him more than anything -- because he is SO special!

Thanks guys for being supportive and always being there for all of us! If you could please say a prayer for my sweet little guy and also the urologist, neurologist, neurogeneticist, cardiologist, and his pediatrician.


1 comment:

  1. Dr. W is great. Keegan sees him for his genetics issues. We love him. VERY SMART MAN! You will be in good hands there. As for everything else, I will be praying. You can live with one Kidney so I feel optimistic about that. I will pray and pray for you, Neil and Logan with everything you are gonna have to go through. You can do it though and if we are there (at Riley) you should come visit!