Monday, July 30, 2018
Look who lost his first tooth!!!!
Macsen was so excited to lose his first tooth! He told everyone he got "10 bucks!" and the nurses got him a LEGO set as well. Such a big milestone
Sunday, July 29, 2018
Bye Abby Gabby. We missy ou already
This lady right here has been such a gift ❤️ She was there everyday from his first Boston hospital stay, every day at Hopkins she would bring me a morning coffee and stay all day until 10pm. She flew up here after we were transported. She made every day easier and better. We will miss her❤️❤️❤️ Love you Abby Gabby
Ice cream bibery
Convinced Mac to get out of bed. We made it worth his while with 2 ice cream bars. He’s sampling from both. So worth it to get some smiles
Baby steps
The plan was to start his milrinone wean today but some of his labs look worse today so they are backing off that plan 😞 just means more time inpatient. He wants to go home so badly.
Saturday, July 28, 2018
Just on tylenol
Mac is hanging in there. He’s still in a lot of pain but the opiates make him miserable - irritable, itchy, and or comatose so we have transferred him to Tylenol but it’s not quite enough. He is finally eating though since we took him off the big meds. This morning first thing he had me take him to the food court in his little wagon to get a spinach wrap with guacamole and turkey. He ate almost 1/2! He’s getting so many diuretics and he’s lost so much weight he’s starting to look a little skeletal 😞 his eyes are sunken and dark.
I think they may start weaning his milrinone tomorrow or the next day and it could take about a week. But on the weekend the hospital seems to go into a holding pattern until the weekday staff comes on Monday so it’s hard for us to make any plans for the coming weeks.
His heart rate has come down and his oxygen has gone up which are both really great. We hope to see some improvement in his function when he gets his next echo.
I think they may start weaning his milrinone tomorrow or the next day and it could take about a week. But on the weekend the hospital seems to go into a holding pattern until the weekday staff comes on Monday so it’s hard for us to make any plans for the coming weeks.
His heart rate has come down and his oxygen has gone up which are both really great. We hope to see some improvement in his function when he gets his next echo.
Thursday, July 26, 2018
Pacemaker teaks
Some neat things about technology... they tweaked his pacemaker while he slept. And later he woke very sweet. Kisses to everyone who’s been cheering this guy on!
Shoulder pain
Mac had an ok day. He ate some blue popsicles, drank ginger ale and water, got lots of shoulder massages (his arm must have been stretched up to get to his ribs on his left side so his shoulder hurts today,) went through dozens of instant heat packs, got his pacemaker tinkered with electronically. He had his chest tube and arterial line removed as well as his 2 IVs in his feet. We got a crash course on some dos and don’ts for pacemakers - no big magnets, no wands at airports, no MRIs ever, no electronics closer to his pacemaker then 6 inches, no lying on top of microwaves. That’s just all the info they fed us today - more to come. His device is Bluetooth so they can monitor his rhythm remotely.
He’s still on some big pain meds but they make him so sleepy it’s a struggle to get him to open his eyes. And they make him itchy.
He’s still on some big pain meds but they make him so sleepy it’s a struggle to get him to open his eyes. And they make him itchy.
Wednesday, July 25, 2018
I can see him finally
I am with my precious boy. He is breathing on his own with a little blow by oxygen. He is on a big cocktail of pain meds bc he has 3 incisions and the one between his ribs is apparently very, very painful. His heart seems to be working a little better but we won’t know until his echo tomorrow and probably won’t see the full effects for a while. His kidneys are very, very sick right now. They have taken a big hit with the diuretics and lack of blood flow. But he isn’t bleeding much and by God’s Grace he is here with us to fight another day. The next few days are going to be hard and we will be leaning on our faith and your prayers to help Macsen and all of us stay strong.
Pic is of his gorgeous eyelashes and his beat up blankie he wrapped around his head
Pic is of his gorgeous eyelashes and his beat up blankie he wrapped around his head
Boston Children’s Hospital 8 East, Room 806
UPDATE: he moved to room 806 today.
Many of you have asked where to send cards, etc. Macsen is on the 8th floor, 8 East, room 806.
Address: Macsen Miller c/o Boston Children’s Hospital, 300 Longwood Avenue, 8 East room 806, Boston, MA 02115.
Many of you have asked where to send cards, etc. Macsen is on the 8th floor, 8 East, room 806.
Address: Macsen Miller c/o Boston Children’s Hospital, 300 Longwood Avenue, 8 East room 806, Boston, MA 02115.
Cautiously Optimistic!
Talked to the surgeon. Everything went as well as everyone prayed for. His QRS shortened substantially - an indication that the pacer is already helping his dyssynchrony. There was scar tissue but the bleeding wasn’t too bad and he didn’t need blood products. He may even be extubated before we see him. He had 3 incisions so he will be in a considerable amount of pain. Thanking God for being by our sides during this day and every day. Thank you everyone for your massive outpouring of prayers, support, and love.
Surgery updates 1 and 2
2nd updates 3:45 pm almost 1/2 way done.
1st update - making the first incision. Prayers for minimal bleeding and perfect placement and no complications
Filler’ Up?
Last week, when I was in Baltimore supporting Mighty Mac, I would go to the hospital as early as I could with coffee for Alex and supplies for the day. Many nights, I ended up leaving very late in the day. One night, I got into my car and realized the gas light was on even before I got to the parking garage. It was after 10pm, and I didn’t have enough gas to get home. As I pulled out of the lot I noticed a gas station right next to the hospital, not even a block away. I pulled in and took a deep breath and all of a sudden the stressors of the week sort of came over me in a wave. I looked around and noticed several people millling about the parking lot and thought to myself, “God, please let them stay away. I don’t have any cash or good will to give right now. I’m empty.”
I got out of my car to begin the process of filling up my tank, swiped my card, entered the zip, and put the nozzle in but, it wouldn’t start! I checked the display and a message flashed up, “See Cashier.” I must have looked like a crazy person the breeze was blowing and my hair was flying around my head. As I started walking over, a lady approached me and said, “You have beautiful hair!” In my head I said a prayer of thanks that she didn’t ask me for anything, and I thanked her.
With wild hair and wild eyes, I approached the cashier’s bullet proof window, threw my credit card into the hole and said “I just need ten dollars’ worth.” The cashier may not have been able to speak English, and what was coming out of his mouth sounded like gibberish to me. His arms were waving around and he right when it started to feel like the most frustrating game of charades EVER, the lady called out, “You have to put the nozzle back in! I got it!” She reset the pump, and as I signed the slip, she pumped the gas for me. I started to walk back over to my car, feeling guilty for my previous prayer, and as I walked over trying to figure out what to say she stepped forward and said:
“I don’t know why I am doing this. I feel like it may be a God thing. I feel like I need to say something to you, because you have had a hard day. It looks like you need a big, may I hug you?”
At this point, I was speechless, so I just nodded and she stepped in for a hug. As she was hugging me, I broke down a little and started to cry. She said, “You know, sometimes, it’s ok for strong people to cry. Sometimes, you have to be strong for people around you and that’s good but sometimes, those same people need to see that you can cry because that gives them permission to cry too.” I hugged her tighter, because that very day had been super tough and I felt like this was information I really needed to hear. She paused, and asked if I believed in God, and offered to pray with me. At that point, I mumbled an apology because I had nothing to give her, and I felt shame. She backed up, held me at arms reach and said, “I don’t want anything from you, honey, I never do this and I don’t know why I’m doing this now. You looked like you needed a hug. I hope everything works out.”
And with that, she walked away. As I got into my car, I realized much more than my car had been refueled. I shared that story with both of my sisters and they agreed, it was a “God thing.”
I got out of my car to begin the process of filling up my tank, swiped my card, entered the zip, and put the nozzle in but, it wouldn’t start! I checked the display and a message flashed up, “See Cashier.” I must have looked like a crazy person the breeze was blowing and my hair was flying around my head. As I started walking over, a lady approached me and said, “You have beautiful hair!” In my head I said a prayer of thanks that she didn’t ask me for anything, and I thanked her.
With wild hair and wild eyes, I approached the cashier’s bullet proof window, threw my credit card into the hole and said “I just need ten dollars’ worth.” The cashier may not have been able to speak English, and what was coming out of his mouth sounded like gibberish to me. His arms were waving around and he right when it started to feel like the most frustrating game of charades EVER, the lady called out, “You have to put the nozzle back in! I got it!” She reset the pump, and as I signed the slip, she pumped the gas for me. I started to walk back over to my car, feeling guilty for my previous prayer, and as I walked over trying to figure out what to say she stepped forward and said:
“I don’t know why I am doing this. I feel like it may be a God thing. I feel like I need to say something to you, because you have had a hard day. It looks like you need a big, may I hug you?”
At this point, I was speechless, so I just nodded and she stepped in for a hug. As she was hugging me, I broke down a little and started to cry. She said, “You know, sometimes, it’s ok for strong people to cry. Sometimes, you have to be strong for people around you and that’s good but sometimes, those same people need to see that you can cry because that gives them permission to cry too.” I hugged her tighter, because that very day had been super tough and I felt like this was information I really needed to hear. She paused, and asked if I believed in God, and offered to pray with me. At that point, I mumbled an apology because I had nothing to give her, and I felt shame. She backed up, held me at arms reach and said, “I don’t want anything from you, honey, I never do this and I don’t know why I’m doing this now. You looked like you needed a hug. I hope everything works out.”
And with that, she walked away. As I got into my car, I realized much more than my car had been refueled. I shared that story with both of my sisters and they agreed, it was a “God thing.”
Pacemaker Surgery today
Still waiting for the OR to open up. He’s so hungry and thirsty - no food or drink since midnight 😩Grateful for Paw Patrol
Monday, July 23, 2018
PICC placement surgery today
12:15
The biggest risk of this next surgery is bleeding according to our surgeons assistant. So talk of putting him on lovenox/blood thinner shots bc he is getting a PIC line days before surgery makes me so nervous. Waiting to talk to the drs now. As of now he is not allowed to eat or drink so they can bring him to surgery to place the PIC.
4 pm:
PICC in progress. We are waiting. Shouldn’t be more than an hour. I will be hunting his favorite canned soup (Wolfgang Puck’s Organic Chicken Noodle) so he can have some as soon as he wakes.
4:34 His PICC line is placed and now just sitting with him until he wakes up. Procedure went very well.
5:30 pm Poor little man looks like a pincushion. The PICC means he won’t have to be stuck multiple times a day and his veins can start to heal hopefully. He’s still asleep so we are staying in the icu for a while. Hopefully just an hour or 2
When IVs blow it really blows
Mac’s Iv held all night. Phew! No emergency trips to get a new Iv in the middle of the night. He did have a lot of leg and foot pain and stomach pain. We used up all the heating packs on this side of the 8th floor and did a lot of massage. He’s exhausted so I was glad to see him fall back asleep after rounds. The child he is today is such a stark contrast to the one that was here 2 weeks ago. I could see it in the doctors faces who saw us while we were here. He was active then and silly and himself. The past week he is another child - hurting, so exhausted. He’s lost almost 3 lbs since Friday (lots of that was false water weight out on at Hopkins.) I am trying to stay strong but I am so afraid for my boy.
Sunday, July 22, 2018
Sometimes it's more than ice cream
What do you do when your little boy has had 3 very traumatizing and disappointingly unsuccessful attempts at getting an Iv in the past 8 hrs and then he asks you to get him some grasshopper ice cream? But the store you can walk to quickly doesn’t have any? You improvise something called “Boston grasshopper ice cream” - chocolate mint candy + Edys vanilla. He loved it and ate for the first time in 24 hours. My poor guy will probably be going to the OR to get a PIC line soon. Anesthesia is so tricky right now but he needs access for his Milrinone, Iv meds and blood draws. They are talking about sending us back to the icu 😩 We just got to step down at 2:30.
On a happy note it was so nice to see Susan. Thank you for the toys and food and good company ❤️
On a happy note it was so nice to see Susan. Thank you for the toys and food and good company ❤️
BNP 3300
Mac is not feeling great today. His bnp is 3300 - so high 😩 So they are starting Iv diuretics but he’s not eating or drinking so he’s on Iv fluids again. He blew though one of his ivs so we are waiting for the Iv team to come out a new one in. He’s so traumatized now he freaks out with just the mention of more “pokey pokes.” He knew losing his other Iv meant having to get a new one and he cried 
He’s too smart. We are supposed to be moving to step down any minute where he can go to the playroom and can walk around more
He’s too smart. We are supposed to be moving to step down any minute where he can go to the playroom and can walk around more
Saturday, July 21, 2018
Boston biscuit
Mac is actually eating today! They don’t have biscuits in Boston so we got him an English muffin and call it a Boston biscuit. He likes it stuffed with bacon. I think surgery is still on for Wednesday according to the heart failure Dr we talked to this am. And we should be getting moved out of the ICU which will be wonderful. A shower, more privacy, more freedom, a playroom to look forward to. Many answered prayers ❤️❤️❤️ Feeling blessed to be here with my big boy
Friday, July 20, 2018
Boston - Baltimore - Bravery
I don't normally update this blog, but when I do, I have a gin and tonic nearby. 😼 Tonic is good for you, right?
Where do I start? Well, first of all we have to explain why there have been fewer updates to the blog throughout this part of the journey. The reason is that this platform was changed over to another server and I think Google took over. Therefore the blog update app no longer works and you need an actual computer or laptop to make real updates. That means, you will get fewer updates by Alex since she is primarily serving as Mighty Mac's personal assistant and never strays far from his side. Her phone is handy, and thankfully, Facebook and the Go Fund Me site have apps that can be updated quickly. So - if you want timely updates, ask to be added to her Macsen The Grayt FB page, or - go visit his campaign: Miracle for Macsen
So Boston went by in a blur. We were expecting to be there for 2-3 weeks tops. That was 3 weeks ago. Lots of reasons for this - at the end of the list is - there's a good reason, because everything happens for a reason. First impressions: Right away we knew we were in the right place. Expensive - but, top-notch medical support. My only criticism is that they seem to suffer from "last-minute-itis." When did they get notified of housing through Ronald McDonald House (RMH)? Last minute, when they already had an apartment (non-refundable) reserved for 1 week through another company. When did they hear about the plan for any of the major things that actually happened, YES! You guessed it, at the last minute. But I digress.
Things that were awesome about Boston: The apartment through Ronald McDonald House only 2 blocks away from the hospital. The public library was pretty cool. 4th of July was kind of neat. Riding the trolley was a highlight for Mac. Oh yeah - the awesome research they are doing at BCH - combining research efforts with the result of shooting a bunch of mitochondria into a newborn's heart (who was out of options), only to see that the mitochondria went to the bad places and fixed things enough to save a life. Astounding medical advancements! Stuff they do in Boston is giving us HOPE that if he could just get a few more years maybe some sort of miraculous thing could be developed to allow him to live a full life.... we also liked the Duck Boat tour.
So anyway - Mac didn't get the pacemaker in Boston because he got bumped from the surgeon's schedule for another young person's second chance with a new heart. Transplant surgery takes many, many hours, so, all the doctor's cases planned for the same day as Mac's got postponed. We hung around for a while, hoping they would work him in, but - finally they said we would not be able to get on his schedule again until July 25. Even with the apartment through the RMH, the costs were prohibitive to staying in Boston, and they decided to wait it out in Maryland at my place.
(Queue the dramatic music that should warn them to RECONSIDER! STAY in BOSTON! The entire time this dramatic music is playing, flash scenes from an epic 7 hour road trip that actually took 12.5 hours. The kids were great, the adults were losing it by the time we actually arrived.)
They were at my place for a mere 2 days and all of a sudden Mac was struggling. Thankfully, I had left my car at the house so she had wheels and WAZE to navigate to Baltimore Johns Hopkins Children's Emergency Room. UGH He bounced from the Pediatric ICU to the General floor and then back to PICU. The thing about Mac that takes time to figure out is that he doesn't "look" as sick as he is - he is such a character that he sort of makes you forget that he is really sick. His nurses plead with him to stop somersaulting in his bed and setting off the monitors. Seriously. He says to me, "upside down is my middle name."
I spent the better part of this week with Alex and Mac at Johns Hopkins this week because Aaron was home in Alabama.
Things I won't forget:
His hugs.
Mac is a hugger. When he hugs you he just sort of melts into you and it feels like you are the only person on the planet worthy of this type of love. It is a great feeling. He is somewhat with his hugs, but he definitely reserves the best ones for a special few. We had some great nurses this week - and I can't help but give a shout out to the JH PICU nurses that really made a difference.
Olivia, Sam, Becca, and - the most special one (in his eyes) - Kelsey. He gave Kelsey 2 kisses, asked her to tell her friends about it and later, he gave her name to the flight crew when they asked if he had a girlfriend. She made quite the impression. It could be because she was efficient, but I think it was also because she was gently stern with him when he would have a temper tantrum.
His temper.
Mac really struggled in PICU (I think) because his electrolytes are all out of whack. He gets dehydrated at the drop of a hat, which is what they found upon admission on Monday. His potassium levels were low in the last labs and he was a little rage monster. Seriously it was like he had "'Roid Rage" - getting upset over silly stuff that never bothers him, and needing things done for him "Right now! Hurry! Hurry!" It was a little crazy.. and very unlike him. So, they gave him some potassium and I swear it was almost instantly effective! He was back, able to handle little frustrations on his own and so, so, sweet. Balance is important, people.
His laugh.
Mac has the best.laugh.ever. People around him will do almost anything to make him laugh. He does the same for you. He loves to make people laugh. He loves slap stick. One of the best ways I found to make him laugh this week was to play like I was forgetful... forgetting what I was doing (get up to get him something and then pause and announce... "now WHAT was I doing just now?" or "What - where am I?" or "Hey! What's my name again?" He would get a big kick out of helping his old, forgetful, Abby Gabby out, but he couldn't help but laugh. He also loves it when you can bounce balls, or toys, or whatever, back to him with various parts of your body. Head butt the wet rolled up paper towel (maniacal giggles), hip check the toy plane (belly laugh!) I love that laugh!
His quest for a full belly.
Mac was so hungry, so much of the time, that he would say, "My stomach is eating itself!" Sometimes he was not allowed to eat because the medical team thought they may need his stomach to be empty. When he would be cleared to eat - he would say "Finally! - Please, [insert bystander name], get me some [insert food type], NOW! Hurry, hurry!" And off we would go! His Nanna came by and made 2 trips to the cafeteria to get him sliders and later, pizza. this is after bringing him his favorite 2 kids of soup from Panera. He finally ate about 1/4 of 1 piece of pepperoni pizza that day. Ultimately, the only thing he actually ate was "nachos" which, actually, wasn't nachos at all but actually quest dip from Baja Fresh. He needed the chips to be broken up into "little but not too little" pieces, so he could dip them in and swipe off the green or red peppers. Man, he loved that queso/nacho cheese. He had that for dinner and breakfast, twice.
His eyebrows.
Mac has the most expressive face and when he is "on" there's nothing like it. Such an entertainer, and so funny! Many people often remark that he seems like a grown man in a tiny little body. His grasp of the English language is impressive - and he is scary smart.
There was a lot more that I never want to forget but - like I said earlier, I am old and it's late. So, that is it for now. I just got a text from Alex that confirms they have landed safely in Boston and are enroute to BCH. This is answered prayer.
Now - on to the next part of the journey. Does he get a pacemaker? Will this buy him a little more time so that the great research and advancements can offer a solution for Mac such that he can actually have a full life? We are praying! Keep on praying. Thank you for all your support.
~G
Where do I start? Well, first of all we have to explain why there have been fewer updates to the blog throughout this part of the journey. The reason is that this platform was changed over to another server and I think Google took over. Therefore the blog update app no longer works and you need an actual computer or laptop to make real updates. That means, you will get fewer updates by Alex since she is primarily serving as Mighty Mac's personal assistant and never strays far from his side. Her phone is handy, and thankfully, Facebook and the Go Fund Me site have apps that can be updated quickly. So - if you want timely updates, ask to be added to her Macsen The Grayt FB page, or - go visit his campaign: Miracle for Macsen
So Boston went by in a blur. We were expecting to be there for 2-3 weeks tops. That was 3 weeks ago. Lots of reasons for this - at the end of the list is - there's a good reason, because everything happens for a reason. First impressions: Right away we knew we were in the right place. Expensive - but, top-notch medical support. My only criticism is that they seem to suffer from "last-minute-itis." When did they get notified of housing through Ronald McDonald House (RMH)? Last minute, when they already had an apartment (non-refundable) reserved for 1 week through another company. When did they hear about the plan for any of the major things that actually happened, YES! You guessed it, at the last minute. But I digress.
Things that were awesome about Boston: The apartment through Ronald McDonald House only 2 blocks away from the hospital. The public library was pretty cool. 4th of July was kind of neat. Riding the trolley was a highlight for Mac. Oh yeah - the awesome research they are doing at BCH - combining research efforts with the result of shooting a bunch of mitochondria into a newborn's heart (who was out of options), only to see that the mitochondria went to the bad places and fixed things enough to save a life. Astounding medical advancements! Stuff they do in Boston is giving us HOPE that if he could just get a few more years maybe some sort of miraculous thing could be developed to allow him to live a full life.... we also liked the Duck Boat tour.
So anyway - Mac didn't get the pacemaker in Boston because he got bumped from the surgeon's schedule for another young person's second chance with a new heart. Transplant surgery takes many, many hours, so, all the doctor's cases planned for the same day as Mac's got postponed. We hung around for a while, hoping they would work him in, but - finally they said we would not be able to get on his schedule again until July 25. Even with the apartment through the RMH, the costs were prohibitive to staying in Boston, and they decided to wait it out in Maryland at my place.
(Queue the dramatic music that should warn them to RECONSIDER! STAY in BOSTON! The entire time this dramatic music is playing, flash scenes from an epic 7 hour road trip that actually took 12.5 hours. The kids were great, the adults were losing it by the time we actually arrived.)
They were at my place for a mere 2 days and all of a sudden Mac was struggling. Thankfully, I had left my car at the house so she had wheels and WAZE to navigate to Baltimore Johns Hopkins Children's Emergency Room. UGH He bounced from the Pediatric ICU to the General floor and then back to PICU. The thing about Mac that takes time to figure out is that he doesn't "look" as sick as he is - he is such a character that he sort of makes you forget that he is really sick. His nurses plead with him to stop somersaulting in his bed and setting off the monitors. Seriously. He says to me, "upside down is my middle name."
I spent the better part of this week with Alex and Mac at Johns Hopkins this week because Aaron was home in Alabama.
Things I won't forget:
His hugs.
Mac is a hugger. When he hugs you he just sort of melts into you and it feels like you are the only person on the planet worthy of this type of love. It is a great feeling. He is somewhat with his hugs, but he definitely reserves the best ones for a special few. We had some great nurses this week - and I can't help but give a shout out to the JH PICU nurses that really made a difference.
Olivia, Sam, Becca, and - the most special one (in his eyes) - Kelsey. He gave Kelsey 2 kisses, asked her to tell her friends about it and later, he gave her name to the flight crew when they asked if he had a girlfriend. She made quite the impression. It could be because she was efficient, but I think it was also because she was gently stern with him when he would have a temper tantrum.
His temper.
Mac really struggled in PICU (I think) because his electrolytes are all out of whack. He gets dehydrated at the drop of a hat, which is what they found upon admission on Monday. His potassium levels were low in the last labs and he was a little rage monster. Seriously it was like he had "'Roid Rage" - getting upset over silly stuff that never bothers him, and needing things done for him "Right now! Hurry! Hurry!" It was a little crazy.. and very unlike him. So, they gave him some potassium and I swear it was almost instantly effective! He was back, able to handle little frustrations on his own and so, so, sweet. Balance is important, people.
His laugh.
Mac has the best.laugh.ever. People around him will do almost anything to make him laugh. He does the same for you. He loves to make people laugh. He loves slap stick. One of the best ways I found to make him laugh this week was to play like I was forgetful... forgetting what I was doing (get up to get him something and then pause and announce... "now WHAT was I doing just now?" or "What - where am I?" or "Hey! What's my name again?" He would get a big kick out of helping his old, forgetful, Abby Gabby out, but he couldn't help but laugh. He also loves it when you can bounce balls, or toys, or whatever, back to him with various parts of your body. Head butt the wet rolled up paper towel (maniacal giggles), hip check the toy plane (belly laugh!) I love that laugh!
His quest for a full belly.
Mac was so hungry, so much of the time, that he would say, "My stomach is eating itself!" Sometimes he was not allowed to eat because the medical team thought they may need his stomach to be empty. When he would be cleared to eat - he would say "Finally! - Please, [insert bystander name], get me some [insert food type], NOW! Hurry, hurry!" And off we would go! His Nanna came by and made 2 trips to the cafeteria to get him sliders and later, pizza. this is after bringing him his favorite 2 kids of soup from Panera. He finally ate about 1/4 of 1 piece of pepperoni pizza that day. Ultimately, the only thing he actually ate was "nachos" which, actually, wasn't nachos at all but actually quest dip from Baja Fresh. He needed the chips to be broken up into "little but not too little" pieces, so he could dip them in and swipe off the green or red peppers. Man, he loved that queso/nacho cheese. He had that for dinner and breakfast, twice.
His eyebrows.
Mac has the most expressive face and when he is "on" there's nothing like it. Such an entertainer, and so funny! Many people often remark that he seems like a grown man in a tiny little body. His grasp of the English language is impressive - and he is scary smart.
There was a lot more that I never want to forget but - like I said earlier, I am old and it's late. So, that is it for now. I just got a text from Alex that confirms they have landed safely in Boston and are enroute to BCH. This is answered prayer.
Now - on to the next part of the journey. Does he get a pacemaker? Will this buy him a little more time so that the great research and advancements can offer a solution for Mac such that he can actually have a full life? We are praying! Keep on praying. Thank you for all your support.
~G
Finally sleeping
Almost 7 am and this guy is still asleep. I think it must be an icu record. Our nurse was great and left him alone most of the night.
Subscribe to:
Posts (Atom)