Playing Drums

This was the first time trying out his new electric drum set.  Aaron loves to play again.  He laughs all day and plays and dances.  He hardly wants to watch TV at all any more.  He is almost 100% back to his normal personality.  I love this kid!!!

I love you Lord, heal my kidneys

Since the day we found out about Aaron's kidney troubles, we have prayed. Aaron says "I love you Lord, heal my kidneys" several times each day. The good Lord has heard little Aaron. His kidneys have improved by 50%. At this rate he could make a full recovery and possibly soon!

This picture is of Aaron playing with his SpongeBob bubble wand on the patio of RMH near our room on the 2nd floor.

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A beautiful weekend

Thunderstorms appeared off and on all day Saturday.  We went to the mall for our morning walk.  Aaron did great and walked quite a bit himself.  Michael bought a 1000+ piece train from the Lego store.  Aaron and Michael spent the whole day working on the train and I was able to catch up on other things. 

Sunday we ran errands in the morning and then dropped Michael off at the airport.  After a long nap, Aaron wanted to play for the first time in months.  We got on his play mat and played trains for a long time.  He did not have any rages all weekend.

However, he did cry himself to sleep which was heart wrenching for me.  We have been working with a behavioral therapist to help Aaron become more independent again.  Our goals are sleeping and eating on his own.  She assured me that after one week, he should be sleeping without crying as long as we followed the plan.  I hope so.  As far as eating, he is doing better.  He will eat some things on his own and he taught himself how to cut his cheese with a fork and knife. 

Monday we went to clinic for labs.  His liver numbers are almost normal and his skin GVH is getting better everyday.  His kidney numbers are slightly improved.  His WBCs and ANC (two numbers that are very important post transplant) have fallen drastically.  He is currently getting therapy to help improve his platelet numbers since they do not increase.  He has developed an antibody that attacks his own platelets.  His body still has a lot of fine tuning to be done.

Rages

Let's start with the good news.  Aaron's liver numbers are getting a lot better and he will likely have a full recovery for his liver.  I expect it will be several weeks to months before a full recovery occurs since his liver problems are probably caused by medications.  The doctors have also lowered his steroids twice now without his GVH flaring up.  The sooner we can get Aaron off the steroids and cyclosporine the better!!!

Many have asked about Aaron's hair growth (and I don't mean on top of his head).  This is due to cyclosporine and will go away after the medication has been discontinued.  This will be the last medication to be discontinued so the hair will probably be around for a long time!  His swelling is due to the steroids.  Some of it is water retention and some is actual weight gain.  This will improve as the steroids are lowered.

Now the not so great news.  Aaron has been raging for three days straight.  In the past, he raged because of the steroids.  We don't know what is causing his rages now since he has been on lowered steroid levels.  Aaron had a full body MRI today to see if he has any microfractures of his bones that could be causing pain.  We haven't gotten the results yet.  He also had a chest x-ray to see why he has been coughing.

His kidneys are not worse than before.  If anything they might be slightly better.  Since the steroids have been lowered, Aaron's blood pressure has come down a bit.  However, he is still on two blood pressure medications.  The doctors also had to add potassium, magnesium and calcium supplements as well as IV fluids since his kidneys are not regulating his electrolytes well enough right now.

I am hopeful Aaron can still make a complete recovery, but we are taking baby steps.

On a lighter note, my husband is cracking me up watching JT videos and saying that guy is good and long as he isn't in any stupid boy band.

Happy Anniversary

                                          Aaron and Mommy toasting.

                                            My handsome boys!!

                                         Aaron saying "I want to eat!"

Our anniversary was yesterday, but I went home to work.  I got back today.  Aaron was in a bad mood and then developed a cough.  He got better towards the evening and he helped us celebrate our 4 year anniversary.  We had fun and Aaron loved the sparkling grape juice with pomegranate juice.

Michael and I have had one crazy year after another.  Every year gets more and more crazy.  Thankfully through the ups and downs, we are still rolling with the punches.

Aaron's health has remained about the same.  No big changes for the better or the worse.  The doctors are lowering his steroids slowly and he is doing well with that.

So much has happened

Day +100 came and went. We could have been packing up the car and driving home, but that won't happen for a long time. My Dad came to visit Saturday night but ended up with food poisoning and had to stay in a hotel. We were sad that he was so close but we couldn't spend time with him. Monday we went to the clinic in the morning. Aaron's kidney levels are very slightly better and the BMT doctors are hopeful they will continue to improve. Later that day Aaron threw up all over his bed and our room at RMH. He spent the night at the hospital for observation. The doctors believe he got it from my dad. He is better now and we are back in our room. This is a positive sign that Aaron was able to recover so quickly.

Blindsided (Day+99)

So much for not worrying anymore. We found out Aaron has stage 3 kidney disease and his kidneys only work 50-60% of normal. He also may have developed TMA, a condition that causes inflammation of the capillaries causing red blood cells to burst and protein in the urine. This condition can range from mild to long term or quickly fatal.

I am upset because this is the first anyone has told us about any kidney problems. The doctors have known for awhile and never said anything. We had an appointment with the nephrologist who informed us. At this point I have no idea what to think. Aaron could use lots of prayers right now. His body needs to heal.
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