Merry Christmas

Merry, Merry Christmas from Macsen the Grayt and our family

Sleep Study #1

All wrapped up for his sleep study

Getting settled into the sleep room with Daddy

All done at 4 am. Poor Daddy wasn't done sleeping though

Macsen's new Neuro suggested a sleep study bc Mac still wakes between 2 -100 times per night. Our new divided sleeping arrangements have helped one of us get a better night's sleep every other night (sometimes 2 nights in a row when one parent is feeling more rested or generous then the other lol.) 

 Aaron went with Mac which I was so thankful for. It was all the way in Pensacola (though if we have to repeat it ever we will try to use a sleep center closer to home.) Macsen did really great with all the wires and stickers (he HATES having stickers on him.) And Aaron said he slept better then ever - of course.Aaron had to sleep in a Lazy Boy and when Mac woke at his normal 4 am the techs came in and unwired him. After all that is was after 5am and Mac wasn't going to go back to sleep so they left. thankfully the Chik fil A was open and M got to play on the equipment while Aar ate breakfast. Macsen is not eating well again. He is no longer gagging - just seems completely uninterested in eating. Sigh. Later that morning Aaron brought MAc to the cardiologist's office to listen to his lungs and heart - he has been making this weird grunting noise for over a month and I just felt better having his card look him over before they came back to Alabama.
We are still waiting on results from the sleep study.

New Neuro

Macsen got a new neuro. I like her. She's in Pensacola and was recommended by his cardiologist. She diagnosed him with hypermobility - his joints all bend past the point where they should. She said this could most definitely be the reason he is having so much knee and ankle pain. It could also be why he can't chew very efficiently and why his speech is such a struggle. She wants us to get a PT and OT evaluation in addition to seeing an Apraxia expert in Pensacola. She also wants to havea sleep study done so we can maybe find out why Mac still wakes so much at night - and also to rule out any possible apnea. So we have all those wheels in motion now - on lots of waiting lists- and we have a follow appointment in February.

Happy Halloween!!!

Macsen loves Marshall from Paw Patrol and he was so adorable in his costume. He sang the theme song to everyone  ("Paw Patrol, Paw Patrol. We'll get there on the double")and ran around all night. He did need to be carried after big spurts of energy bc he would wear himself out. He is learning new words and phrases at an amazing rate now. We are so proud of him.

Macsen eating never gets old

Wonderful summer

 

Macsen had a wonderful summer. We got to spend not 1 but 2 weeks at the beach with Macsen's grandmother and with his aunts, uncles, and cousins. He loves the beach. Loves to swim.
He had several doctor appointments of course. He saw his cardiologist and was outfitted with a holter monitor - not once, but twice. The first monitor was defective and we only knew when they hooked it up to the machine in the office after wearing it for 24 hours. So he had an extra 24 hours with all the stickers and wires and little backpack but he handled it like a champ, like he does 99% of the time. He also had several hearing tests and he passed the last one 100%! No hearing issues!!!
He enjoyed having his sisters home everyday - they enjoyed dressing him up lol.

August is here

 

The girls and I enjoyed an amazing overnight trip with their GirlScout troop. We got to see a side to the Georgia Aquarium we have never seen - the behind the scenes side. we even got to sleep in the tunnel. I will never forget watching the Sea Turtle and Grouper and Whale Sharks gliding by overhead as we all tried to keep our eyes open well into the early hours of the morning.

And even more significant was that I LEFT Macsen OVERNIGHT! What the What!!!? And he had a great time with his daddy who sent me this photo. "What happens with Daddy while mom is on an overnight trip, stays with Daddy." Brownies for dinner? Maybe lol

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! 

Overdue updates

Sorry it has been a while since I have updated. We have been trucking along - working on eating, speech therapy, trying to get and stay healthy with all the flu viruses swirling around. 

Macsen's sisters and I went on an overnight trip to the Georgia Aquarium with their Girl Scout troop so Macsen got to have some one on one time with his daddy. This is the first time I have ever been away from M overnight and I admit I felt some sadness and a little hesitation driving away Saturday afternoon. He had a great time with his daddy - they even made brownies. The girls and I had an absolutely amazing time sleeping at the aquarium - we made memories I hope they will always cherish, I know I will. Tomorrow we drive to Pensacola for a cardiology appointment - we are praying for all good news. We are loving this taste of normal we have had post Fontan and are not ready to give it up anytime soon.

School!

Macsen aged out of the Early Intwrvention program when he turned 3. We had been receiving services with the national program since he was 10 months old. Every month a physical therapist, speech therapist and occupational therapist came to our home and worked with him for an hour. We opted not to test him for the school program in August before we left for Philadelphia because we didn't know how long we would be gone and what kind of shape he would be in. After we got back we started the paper work for the continuation of his services in the school system. It has taken until now to finally complete the process to get him in - he tested too well in physical and occupational therapy but qualified for speech therapy. The program here consists of 3 hours once a week at the Early Education Center.

Macsen was so excited to start. He wore his tiny back pack with such pride. Leaving your child for the first time is tough but when you know he will have a nurse there that lives across the street from you it is a little easier.

Update - MAcsen hada great time at school. He cried when I picked him up because he didn't want to leave! 

CHD week

Februrary 7-14 is Congenital Heart Defect awareness week. It's our week to try to help bring more attention to the serial killer called CHDs. Do you know someone in the US dies every 2.5 hours from a CHD and it is the #1killer of children under 1 here? Yet, how many commercials have you seen asking for donations to help find a cure? How many 5K races have you run for a cure or awareness for other diseases? Have you even seen one for CHD research? 2-3 million people are living with CHDs in the US right now - chances are you are one, or know several personally. Please consider donating to the Children's Heart Foundation - they fund much of the research being done to find a cure for our children. Just go to their research tab to see what promising new studies they are funding.
Macsen needs more breakthroughs to survive. His heart is not fixed - he still only has half a heart that works twice as hard to keep him alive. It only makes sense it will last at least 1/2 as long as a 4 ventricle heart. He needs this research, these doctors and scientists funded and motivated to find better ways to help his heart function. He needs them to find ways to grow him his own heart, from his own cells that his body won't be constantly fighting against like it would with a donor heart.

Goodbye breast pump

After 40 months my body was beyond done with pumping breastmilk. I tried every supplement and diet change to help make more, I even tried a prescription medicine that did help for a while. But Macsen is drinking fortified goat milk now and I felt comfortable finally packing this pump away. Comfortable and elated to be honest. Pumping milk 4+times per day and sometimes overnight is a chore and I will not miss it!I finally have some free time! I feel blessed I was able to produce as long as I did and that I was able to keep Macsen off a feeding tube for his first 3 years. I know the milk helped him fight off infections and out of the hospital so I am nervous finishing out the rest of the cold/flu season with just his immunity to protect him. But we can only do what we can do right? To a new chapter! 

Happy New Year!

I hope 2016 is our best year yet! No surgeries on the horizon! Finally!
Macsen is talking more, eating a little more, growing a little more. It's GOT to be a great year. Many blessings to all of you who have stuck with us this far.