Where we are now

Currently Chase is doing well although he has some unresolved issues.  He is still passing blood in his stool, but not as much as he was before the probiotics.  He has high blood pressure that has been documented since he was about 6 months old.  His blood work still shows anemia, metabolic acidosis, low CO2 and high platelets.  He passes undigested food daily and his skin is always powdery and salty.  He has developed PICA, believed to be a result of his inability to absorb nutrients.  He eats chalk, dirt, sand, soap, paper, leaves and anything else he can get his hands on.  He drinks water constantly and he has hyperpigmentation in his skin. 

On a recent visit to the beach, Chase drunk the salt water constantly.  We couln't make him stop.

His chronic cough has gotten better and he is no longer stooling 20 times a day.  He does still have diarrhea, but the high doses of iron he takes helps.  He receives therapy twice a week, physical therapy and occupational therapy.  He is hypotonic, so PT works on his mobility.  They have helped so much and he began sitting at 9 months and walking at 14 months.  They are also signing with him as he is a bit delayed in his communication skills.  His occupational therapist helps with his inability to eat and swallow normally.  At 14 months, he began to eat a few mashed foods.  He gags on everything and at 16 months is still only able to eat a few things. Some days he may eat 2 bites of food and some days as much as 10 or 15 bites of food.  His main source of nutrition is still breastmilk.  He nursed every 2 hours around the clock until he was 12 months old.  Since then and as he has started to eat more, he goes about 4 hours during the day and 3 hours at night between feedings. 

A few weeks ago, Chase got a new GI doctor at the hospital we are established at.  She seemed very intrigued with his issues and told us she would be consulting with other doctors before our next visit with her.  He also seen a new nephrologist.  They are reluctant to put him on blood pressure medicine since it is dehydrating and sedating in some cases.  At our next visit with them they are going to do an ultrasound of his kidneys because of the metabolic acidosis and an echo cardiogram to make sure the blood pressure is not enlarging his heart. 

I have tremendous faith that God will see Chase through all of this and he will outgrow it all.  In the meantime, I feel it is my job alone to ensure he is followed as closely as needed and nothing is missed.  Chase is such a happy little fellow.  He smiles all the time and constantly reminds me of both the complexity and simplicity of life.  God has blessed us as a family so much it is hard to put it into words.  It is my goal everyday to live for my Jesus and praise him for all he has done.