No news is good news

Sorry I haven't updated in a while but in the heart community no news is most often good news. When life is good we are too busy living it to chronicle it. 

Macsen has been learning lots of new words. His favorite thing now is to say "High five. Down low. Too slow" as he yanks his hand out of your reach and laughs. He's a little stinker. He's not eating nearly as well as he was when we first started the CBD oil but  he isn't gagging on solids either. Maybe he is just being a typical picky 3yr old. He also seems a little sturdier going up and down stairs and in general - not falling nearly as much as he was a few months ago. I think he is getting stronger. 

Nights are not great for us though. He still cries many times during the night - sometimes it's because he is having knee or foot pain and I have to rub his knee or his foot. It's always just 1 that hurts. Sometimes a heating pad or a middle of the night warm bath soothes him enough so he can finally fall back asleep but other times nothing helps. It's not every night of the month but sometimes it can be every night of a week and then we can go a week with no mystery pain.  And he still drinks 1-3 bottles over night. We tried to cut them out but after a week of being up all night with him crying for milk Aaron and I were losing our minds and he was losing weight so we went back to letting him have them. Things we never did with our heart healthy girls we allow with him :( He's still so small if he wants something to eat or drink I always say yes. 

Tonight while I was putting him to bed he got the hiccups. He was completely confused and I realized he hasn't had the hiccups since ... The last ones I remember were when I was pregnant with him. I wonder if the surgeries somehow messed up the mechanism that triggers hiccups and he's only now healed enough.... He kept saying "Uh oh Mama. They no go" bc they wouldn't stop lol. 

He had an absolute blast bowling on Father's Day. We've been before and he was bored but this time he was always asking if it was his turn yet and was ready to shove his ball down the kiddie ball ramp towards the pins. It was the smar bowling alley we had our fundraiser at while we were pregnant for him. It's incredible to think back to those days of constant fear and doubt that we would ever get days like this with our boy. And here he is - bowling, drawing on himself, putting imaginary stuff together, learning, growing... We are truly blessed. 

A CBD Miracle

Anyone who reads this blog and knows our family knows of Macsen's ongoing struggles to swallow solids. Four feeding therapists, 3 neurologists, 3 MRIs, 4 gastroenterologists, an upper GI scope, and 2 swallow studies have never been able to figure out why he can't swallow. They also haven't been able to really help him eat more than a few nibbles despite 2 years of biweekly feeding therapy sessions. I have tried every spoon, vibrating toothbrush, chewy tube, mouth exercise, and feeding technique I could find. I have talked to hundreds of other parents whose children also couldn't eat hoping to glean some insight into what could be going wrong. I have read every book and medical study I could find to try to find a solution.

Several months ago I started looking into CBD oil - cannabinol oil. It has all the healing properties of cannabis but none of the mind altering compounds marijuana has. It is legal and can be ordered on Amazon. I ordered a tiny bottle for M for $60 with very little hope it would help- we had tried almost everything, short of electric shock treatment, and I was used to being disappointed. 

I gave it to him right after opening the box - 6 drops on his tongue and he said "Mmmm. Yummy." 3 hours later as our family sat down for dinner, Aaron and I incredulously watched as Macsen put bite after bite in his mouth, chewed, AND DIDN'T GAG when he tried to swallow. Aaron looked at me and whispered to me behind his hand " Are you seeing this? What is happening?!!!" And Macsen has asked to "EAT" almost constantly since we started using it. And the other amazing things are what he is eating - not purées or soft foods - he's asking for corn dogs and meatballs, cracker sandwiches with pepperoni and cheese(he just polished off 4.) And the volume! He doesn't just eat 2 bites of the corn dog - but the whole thing!! This is an overnight, almost instantaneous change and I know it is the CBD oil. I am so grateful that we found this and our prayers were answered. Our lives are all so much better since Macsen started eating - my constant stress and worry about why he couldn't eat and what else I could do to help him are gone - poof! It truly is miraculous. This is the oil we bought. It has been a Godsend for our family.

Cardiology appointment

Macsen did well for his cardiology appointment. He liked to look at the echo screen and name all the colors. He was such a good boy - holding very still and he even helped wipe off the echo goo. It seemed to take forever for the doctor to come discuss his results. She saw something concerning - a shadowed area in his left ventricle- that could indicate a clot. So she went back though months and months of a his and said what ever the shadow is, he has had it since before his fontan. She upped his aspirin to a full tablet to be safe but said since he doesn't use his left vent he should be fine. We talked about M finally eating as well and when I told her the results we had with the CBD oil she have me a double take. I don't think she believes me though.

Aaron took off work to go with Macsen and I - it's still too long of a trip for he and I told to go alone. 3 hours in the car each way is too much for him without someone else in the back with him. Plus Aaron kept him busy so I could talk to his doctor - usually by that time in the appointment M has had enough and has a complete meltdown and I can't ask the questions I need to ask. 

We were also able to eat lunch at Aaron's brother's restaurant called The Vault in the old part of Pensacola. Everything was delicious and it was nice catching up with M's Uncle Sam. 

When we got home I was so grateful for friends who picked up the girls from school AND helped them with their homework. Now THAT's a good friend!