My crazy week

This week has been a doozy. 

Noah

Monday Noah had a GI appointment about an hour away bright and early. 

We hadn't seen this doctor is almost 3 years. Recently Noah has been having issues with his stomach becoming 2-3 times lager than normal. It gets so big so fast and looks really painful. I wanted answers. She said she felt like he had a milk protein allergy. I told her I noticed that he was fine until we put him back on pedisure. We had even tried pedisure peptide but both resulted in the same issues, bloating, grumpiness, runny nose, more susceptible to viruses. She said to stop using it which I had 3 days before this appointment. In those 3 days there were zero issues with bloating, he was happier, talking more, more cooperative. Then he did have one day where he bloated again really bad and his nails turned blue. That made me nervous. He was really really cold. We had to then head back to the doctors and back to the hospital for more tests. X-rays and labs mainly. He ended up seeing his pediatrician twice this week on top of seeing GI and 2 trips for X-rays and labs. The end result was well we think he is ok and just getting backed up sometimes. Also he has raynards and there isn't anything you can do but keep him warm. 

Micah

Micah had an appointment with the GI. He has an allergy to sugar we were told when he was first home so we avoid the sugars as much as possible. Well I recently found out from his Ped that it's more likely he is missing an enzyme that breaks down the sugar and that can be replaced. We were thrilled that there may be something we can do to help him so that he can eat what the rest of us eat. I firmly believe he feels not quite part of the family and left out due to his dietary restrictions. Micah also saw his Pediatrition this week due to his drowsiness. He sleeps all day and night. No reasons we can think of he's just always tired. She said his adenoids are big but not to the point of obstruction and she really feels it's time for a sleep study. We have had all the labs done tested for everything and this is what is left. Maybe he has sleep apnea? We called the sleep doctor and they can't see us til June. Umm....I ask for another sleep doctor and left s message for them to call me. We also had an appointment for psych. It was a new dr and he suggested in home behavioral therapy. We have looked for that for years and have yet to find something. He suggested we call MHMR which we did and surprise no answer and the haven't returned my messages. He did feel like it was ok to try to go down on Micahs meds. So we have done that. His teacher and I are in constant communication so if this med change doesn't work we will go back up immediately. 

Misha

Misha decided he didn't want to be left out so he woke up and was soaked in urine. His diaper had exploded and he was peeing a lot and drinking a ton all day. This means his one med isn't working anymore. So when this happens it isn't just a mess I need to clean up it is a call into his endo and emergency bloodwork. Then a med increase then more bloodwork. So he has had labs twice this week :( We increased his med and hope that fixes the problem. 

I have also had to call to get med changes ordered and supplies changed from the DME (medical supply company). Noah isn't happy to give up his pedisure or as he calls it his "cardoor". I have started him and Misha on almond milk and coffee. I am hoping it helps the ADHD. We will see. In addition to our busy medical life, gymnastics started up again this week for the 3 middle gals and Trin had her acting class start and had an audition this week for Alice in Wonderland. The dog had to go to the vet to be neutered. We did find little moments to find time for school too. We wore a lot of hospital masks and diffused a lot of thieves this week. I am just so relieved this week is over. 

Next week we have 8 dentist appointments and Micah needs cleaned out and will have an endoscopy and colonoscopy both with biopsies. One night next week Paul has a rodeo work thing so it will probably be a pizza or crock pot kinda day. Most of next weeks appointments are on one day. 

Never a dull moment in my humble abode. 

Be blessed