Merry Christmas!!!!

 

 

Check up and new Dr

We came to Pensacola for a 4 month post op check up with Macsen's cardiologist - everything is looking good on that front. She was very impressed with his bloodwork - said his albumin levels were amazing. She was surprised bc he is not eating at all and we have expected his bloodwork to reflect some nutritional deficiencies but I guess the supplements, 8 oz of breastmilk and 16 oz of fortified goats milk is enough for him? Not enough to grow or gain weight though - he's down to 28 lbs and 34 inches tall. 

He did so great during his echo. Even the part under his neck 

Then we saw a new GI. We had to wait FOREVER - kind of a pain but I know it's bc she is really listening and asking all kinds of questions which is good. She prescribed a new laxative - lactulous which I'm afraid M won't take. It's very sweet but we'll pick up the prescription and give it a shot. The magnesium we are giving him twice a day is obviously not working to help him go daily or even every other day. And she scheduled a procedure to take a look at his esophagus, stomach and intestines. It means another sedation but with him still not eating and now losing weight we need to figure out why. 

We are also going to see an orthopedic doctor to talk about M's leg and foot pain - he will need X-rays ... Again. Blood tests didn't reveal any deficiencies that might explain the nightly pains he has suffered for months - last night in the hotel room was especially awful complete  with a shower at 2 am and almost constant rocking to try to alleviate the pain. Never fun but especially frustrating with 2 other kids in the room trying to get some sleep. We are all exhausted today and after grabbing some lunch we are headed straight home instead of tooling around Pensacola like we normally do. Hopefully we will be home nice and early so we can all get to bed early. Macsen and I are also both recovering from a pretty intense cold. 

We are looking forward to 2 weeks of no traveling, sleeping in, baking, and Christmas!!!!!

Macsen catching bubbles in his mouth while we killed time in the exam room

Nothing new

Sorry I haven't posted in a while. We have been busy with end of the year activities. We are looking forward to Christmas break - Macsen loves having his sisters home. And of course looking forward to Christmas though I wish we could spend it up north with family. We are just traveled out for a while and will stick close to home. 

Not much news to report on Macsen. We are battling the same problems - lack of appetite, constipation, very slow growth and weight gain. We will be seeing s new gi at Children's in Pensacola. I foresee many tests in our near future. Right now M takes magnesium citrate 2x/ day to help him go #2 but he still only goes about 1x/week. Not enough. Yrsterday, I switched him to goat milk to mix with his meal replacement powder - hoping that cutting out cow milk will ease his bowel issues. I have tried so many things that just aren't working. None of the tried and true things seem to work or are impossible to implement with him bc of his inability to eat many solids. He only wants to drink water so suggestions to drink nectars, juices, smoothies just don't work with him.

Something has to give though - his growth and weight gain have completely flatlined. He doesn't sleep well at night - needing to be rocked and soothed though he never fully wakes - just cries in pain. 

On the bright side his oxygen levels look pretty good - 90 - and his heart rate has come down.