Birthday Boy!

Our little guy is two!  I think he really enjoyed his birthday celebrations, but is exhausted.  He went down for his nap really easy today which is why I have time to blog about him :). 

He has been doing great the last several weeks and seems to be healthier than ever.  His appetite is about the same, some days good some days bad, but he doesn't seem to be bothered by his colitis.  He hasn't been visibly bleeding over the last few weeks and several hemoccults have been negative.  He is doing well with his therapies and has picked up on some more sounds and signs, making communication easier.  He still gags on most solid foods and swallows things whole, but is more willing to try new things. 

We met with his neurologist this week and got to see his full MRI results.  There were a couple of abnormal spots, but she said these usually didn't mean much.  She said they were caused by lack of oxygen at some point in time, but shouldn't be the cause of his sick spells.  She did confirm with us that she believes he is suffering from migraines with aura.  He began taking a new medicine last week that will hopefully alleviate the migraines.  He is still hypotonic as well, which could explain some of his clumsiness and frequent falls.

He still has some low ferritin levels on his iron profile.  He jerks a lot in his sleep and still wakes every 2 to 3 hours throughout the night.  He has also been having some leg cramps.  She told us all of these things could be related and lead to the migraines.  The new medicine is a bit sedating, so we have been giving it to him at night.  The hope is he will sleep better, which may stop the migraines.  To get his ferritin levels up, we would have to increase his iron doses, but that isn't easy to do since the iron causes his colitis to be worse.  We plan to keep his dose the same for now and see if the new medicine helps. 

They plan to admit him in July for a sleep study and a cath to collect a 24 hour urine.  My hope is the medicine helps him enough between now and then that we can cancel both.  He is also being referred to an opthamologist just to rule out anything with his right eye (he signs to us that it hurts often, which we believe is just part of his migraine.)

Chase is absolutely loving being outside and playing with Aubrianna.  He is climbing on everything and his favorite spot is his sandbox.  We are all looking forward to an upcoming vacation to the beach.  What a huge sandbox he will have then!