Getting back to normal.

I've been wanting to give an update to our stem cell trip but some parts of the trip have really angered me and I needed a break before posting lest I look like I'm a ranting lunatic. But I probably will anyway so here goes...

Atlanta on the way down.

Can't you just see him asking if we're there yet.

The flights down there went pretty great. On our first Delta flight into the Dominican, a gentleman from business class immediately got out of his seat when he saw me get on the plane carrying Liam in that seat and he grabbed one side and helped me carry him all the way to the back of the plane. Not that I was going to refuse, but there was no way he was going to let me carry him alone. :)

On our return flight home I texted Shawn and told him I was never.ever flying with Liam again. It was the heat of the moment and I was done. Liam was over done. And I never want to do it again. Liam was a trooper. He really was. But sitting confined in a seat all day long when your body wants to move is painful.

On our first flight coming home from out of the Dominican he did pretty good. I got him situated well but he still isn't 'properly' seated so it can be a problem with his head control.

And that makes him cough.

So that's what he did.

The entire flight.

And the gentle(cough cough)man in the seat in front of Rylie rubber necked the ENTIRE flight to look at Liam. He even put his sunglasses on so he could stare with out looking so obvious. Like that wasn't obvious! I put Liam's iPad right in front of his face so the lookey loo couldn't see him.  Now, I understand, Liam is coughing. A LOT. But COME ON! Where did manners go? You look once or twice, can see the child has issues, then turn your face back around and keep to your own seat. Or, if you have a heart, ask if there's anything you can do. But don't ogle my son as if he has the freaking plague. He's obviously healthy, not crying, and I am attending to his needs. Leave us alone and get your staring fix by watching a movie. Rylie got a chance to stare him down when we switched seats and when he realized what she was doing he never looked back again. asdfghjkl...

After landing, a REAL gentleman in front of my seat, who never once turned around to look and stare, asked us if he could get our bags for us. That's what an empathetic, considerate person should do. I was so proud of him for being so kind. I wanted to tell him that but thought it would be too weird.

Trying to wake from the propofol after the extraction. This time they extracted stem cells from both hips.

When we got to Atlanta we had a three hour layover. I was happy about that because it allowed us time to get Liam out, eat, and just relax before another plane ride. Well, Liam was at his over done point. He was crying and crying and while Rylie and I tried to eat he wouldn't calm down. I had to get up and walk with him and let Rylie finish and then we'd switch off. Each time I walked him back to the tables where we were eating he would freak out and cry even harder. We switched off and I finished my now ice cold dinner and kept an eye on Rylie as she walked with Liam. Whenever she'd get close to my table he would cry again. I grabbed Liam and took off for the bathroom so he could lay out on the counter and relax and when I picked him up I lifted his shirt and saw a dark black and blue depression on his spine. His stroller straps had gotten twisted and had knotted right on the middle of his back and even though there was a thin cushion over it it was still digging into his spine.

After the cath, he wasn't complaining & for that I was shocked & happy.

I felt horrible. My poor wee man had been trying to tell me he hurt and I thought he was just bothered by all the traveling. Mom fail.

With the bruising on his thighs from the procedure and now the bruising on his back, he was not a happy guy. He cried for the rest of the layover. I felt so bad for the people in our tiny little terminal. They were probably only 20 seats and there was no escaping Liam's irritability.  None of them stared at us though. ;)

Once we were home Liam ran a low grade fever off and on for days. It would only last a couple of hours at the most.  He wasn't miserable, but he wasn't his happy self either and with not being able to give any medicines due to the stem cells, we relied heavily on homeopathic treatments to treat his discomfort. We did onions on the feet, egg whites on the feet, essential oils on the chest and feet, colloidal silver, and extra vitamins. It was the first time I've ever had one of my kids go medicine free for pain from a fever and Liam ended up doing really well.

He had to miss several days of school out of pure exhaustion and crankiness though and it took a full week following the procedure before he was back to his old self.

People ask when we will see improvements. It's a valid question. When will we see improvements? I want to see them now too. I'm praying we will see them now. But we might not see improvements for a while. It could be up to a year. And that's a long time to wait looking for signs of answered prayers and hopes and dreams.

This is the moment, after 20 min of a flipping, curving catheter, the Dr finally got it through and up into his carotid. You can't hear them in the room but they all shouted and whooped and were giving thumbs up in relief for finally getting it.

The gorgeous sunset view from our room. Ocean on the left & mountains on the right.

Glad thats over

Our driver picked us up at 12:45 yesterday to take us to the hospital and Liam was already sedated and getting his stem cells extracted by 2:00.  We were in a different area of the hospital than when we were here last time and it felt much more like a typical US hospital set up. Last year our room had a thick bed comforter and a wooden armoire and couch so this set up started out feeling like much more sanitary.

The extraction was done literally on the other side of a glass partition from our room. It was clouded so I couldn't completely see but it was comforting knowing he was within reach.

Last time when they did the extraction I didn't see Liam again until it was time for the infusion. This time Liam was brought back to me, pleasantly sedated on propofol, and he slept for most of the next two hours while they processed his stem cells. Again, it was nice to have him with me right there while we waited.

Once the cells were ready they took Liam right next door through another clouded door where they got him all set up in the cardiac cath lab. Once they had threaded the cath through his femoral artery in his left leg and had it up in his carotid, they called me back so I could watch the procedure. While the procedure is done Liam is continually under an xray and I am in the room with the monitors so I get to watch the stem cells pulse through his brain. It is still such a really cool thing to witness.

I watched them infuse on the right side of his neck, then they did something different from last time in that he went up some vessel on the back of the neck with another vial that sent an infusion right to Liam's cerebellum and parietal lobe.

Next they went to the left side but the cardiac interventionist couldn't get the cath threaded. I stood there watching and getting really nervous because he kept shooting it up his torso and then it would just bend and reroute. I didn't want to watch but at the same time I was rooted to my spot and couldn't move. The CI threaded that catheter out and switched it out a few times and after 20 min he finally got it threaded up to his neck. The whole lab fave out whoops and hollers and started giving thumbs ups to me. It was a huge relief to see that catheter up where it needed to go.

When they finished with that infusion I was asked to leave while they finished up with Liam. When the CI was done they asked me back to the room and we all gathered around and prayed over Liam.

It is a full two hours in the recovery room before we can be released and Liam did such a great job. I was dreading his recovery because last time he screamed for the entire time. And if you've ever heard Liam cry, you know he cries very quietly. But not after the last procedure. He wailed like a mortally wounded animal. This time he was so calm and only fussed a couple of times.

We were given the green light to go back to the hotel and 8 hours after leaving we were back. I was a bit concerned that Liam was running a low grade fever and sure enough in the middle of the night he woke up hot and dry and uncomfortable. I spent two hours awake with him trying to make him comfy with no meds. Dr. Anthony didn't want me to give anything if it wasn't necessary in order to allow the stem cells to proceed with out interruption. I used some essential oils tried to get him back to sleep.

This morning he still felt a bit warm so we took him to the pool for a couple of hours and it really cooled him off. I gave him a cool bath back in our room and I am praising God that he has been fever free the rest of the day.  But I'm still keeping essential oils on him for now.

Dr. Anthony called to check on him and will do so again his evening. We just feel so blessed and are thankful that things are going well.  There is a lot of bruising from the cath and they took extractions from both hips this year but he is healing very nicely. I really think the worst was having to take off the tape. Liam and tape are not friends.

Thank you for all the sweet texts and messages!The comfort felt knowing others have your back is indescribable. We are excited to head home tomorrow.  We have a long day with 12 hours of travel but after a week of isolation and this trip, I am looking forward to getting back to normal and moving Liam forward.

Today is the day

With a very early wake up call of 4 am, I had a pretty grumpy, coughing Liam for the first leg of our flight to Atlanta. I was pretty absorbed with taking care of Liam and really didn't notice anyone else on the plane. Apparently a lady kept giving me and and Liam the stink eye and Rylie got her to stop by giving her one back.😳 I understand his coughing fits will have people looking at us, concerned to see if he is sick (I might do the same), but there is no reason to stare us down. As always, the attendants on the flight were wonderful and the pilot even helped me get Liam through the door.

When we got to Atlanta we had a two hour layover where Liam got to stroll the airport and really relaxed and enjoyed himself. He was having such a good time that we actually missed our early boarding to Santo Domingo. When we got to our terminal, with 45 min to spare before takeoff, they were on zone 2. I was a little panicked about trying to get a forty lb boy sitting in his car seat, down the tiny aisles with people already in them. Thankfully a wonderful gentleman in first class offered to help me take Liam down to my aisle and I took him up on it. Liam did amazing on this flight. Probably due to me being able to get him out of his seat and into my lap. He relaxed, and hung out with me the entire flight. I had another lady who kept looking at us on this flight too. I looked at her and smiled. A little while later she looked back and smiled. I did the same. Then she started a conversation with me telling me how much she loves kids like Liam and that it's what she does for a living in the Murfreesboro school district. She was such a sweet lady and so fun to talk to. And she exhibited the perfect way to approach a special needs parent, smiling, gentle, and genuine in her approach.

When we landed in Santo Domingo the weather smacked us in the face. It's hot. Liam doesn't do heat. The last time we were here it was February and perfect. I didn't even think about it still being so hot here right now. Liam kept it together as long as he could and made the hour drive to the hotel (in an air conditioned van) before the heat got to be too much and he threw up. We were literally sitting in front of the hotel unloading and all I had left to get out was Liam when he had had enough.

I was happy that if he was going to throw up that he picked the end of the trip, right as we were getting our hotel room. Unfortunately, the hotel was not ready for us and we had to wait over half an hour for our room to get ready. Liam was crying and drenched in sweat so I took him to the lobby couch, stripped him down, and cooled him off with some wipes. It helped some, but he pretty much cried for the entire wait. He was done.

Once we got to the room he settled down and had a great night. We watched the sunset and all of us were asleep by 9:00.

 Our driver will be picking us up at 12:45 today to take us to the hospital and I suspect Liam's procedure will start about 2:00. I anticipate getting back to the hotel about 8 or 9 tonight.

 I can't believe the day has arrived already. It's almost surreal to be here again. Thank you so much for all your love and support and prayers. We are so thankful to not be doing this alone. 💚

Two weeks to go! Eeeek!

Traveling with Liam isn't the easiest thing to do, let alone flying in an itty bitty plane. It's actually quite a feat to be sure. I have to call ahead to the airline and make sure they are aware that I will need extra time in order to board and help with his wheelchair/car seat/bags/etc. This is to our advantage as it means we actually get to board before everyone else. It's actually a huge relief to not have everyone's prying eyes watching you try to wrangle an almost 7 year old into a car seat when his body is fighting you every step of the way and in such a tiny spot as an airplane seat. I've received many fat lips and bruised eye sockets from his flailing fists and the less people watching that happen, the better my psyche will be. And since we exit last, no one is around except for the flight attendants and they are usually very helpful to me, asking me what they need to do to accommodate Liam and expedite our departure.

Liam is fed homemade food, not the commercially prepared cans of  formula that he used to get so this time our travel has a different set of requirements regarding transport. Since he's g-tube fed and entirely dependent on what I make for him, I will be making all of the food in advance, freezing it, and packing it in gel pack freezer packets for the duration of the trip. When I called ahead, I asked the airline if it will be a problem bringing his food on board and she said no, they can't keep me from bringing his medically necessary items.  She says that, but you watch, they are going to be eyeing me suspiciously when I try to get through security with four 32 oz containers full of liquidy goodness. Oh, you don't want to go through x-ray with the wheelchair? We get an automatic bomb residue check. Hooray.

Liam lost another tooth yesterday! That makes for 3 empty spaces in there!

We only have $782.40 to go! Liam has the best friends, truly. Thank you for all your prayers, questions about how this all works and our expectations from it, and for your continued belief that God is still in the miracle making business. This trip wouldn't be possible with out all of you.

Never say never

It's become time to let you all know the news!  The blessings from the Lord have not ceased since we went last year and we are close to being able to take Liam for another stem cell treatment in the Dominican Republic!

It is just over one year from when we went before and I never thought we'd go again. It is sooo expensive. Like, we could adopt a child, expensive. I figured it was a one time shot and that would be that. But as I've seen time and time again, God lays a foundation in my life that he builds on and I stand in awe as his power is made gorgeous in my weakness.

After coming home last year Shawn and I received a very large donation for our stem cell trip. When we contacted the family that gave it to us and told them we had already gone on the stem cell trip, they told us to keep it and use it for Liam for his future. So that's what we did. The money was put into Liam's savings and it has sat there all this time. We then got several more random donations this past year and have watched Liam's account blossom into what looked like another payment on a stem cell procedure. Out of the total cost needed, we are almost 75% of the way there!! It's crazy to be so close when we haven't had to try!

I was thinking about how close we are and the timeline of when we'd like to take Liam again. If it all worked out it would be great to be able to go at the beginning of the school year when therapies start anew and the school year is beginning so we could see how his progress goes within that timeline. With that thought in mind I was wondering how to get to our goal before then. How can we get the rest of the money before the end of September?

We have done some fundraising in the past and the last time we went for stem cells I bought 50 tees with 
the new blue color but the same Limitless design as when we did for our HBOT treatments years ago. Because the money literally just flowed in last year, we didn't have to try to sell the tees. We were blessed beyond measure with exactly what we needed and so the box of tees has been sitting in my garage ever since I got them.

What to do with them? Maybe this time, with the end so near, we can try to sell them. If we sold all of them at $20 each we would be 80% of the way there! :) And that is so very close to the final goal needed!

 So, as a special needs mom and an advocate for a little man with no voice, I am once again, swallowing all pride, stepping out of my comfort zone, and sincerely, humbly asking you if you'd like to help out our sweet boy and get him stem cell treatment one more time. Friends, family of friends, friends of friends, strangers, and everyone in between, we'd be so grateful if you'd like to pitch in. It's no lie when we say every little bit helps.

Liam has his own paypal account where you can donate. The monies put there go directly to him. We have tees in small, medium, and large. The smalls usually go quickest. Aidan and Ian are wearing mediums in the photo above.

 

 

Thanks for following with us and watching how God continues to work in the life of our little boy.

Our hope is in the Lord where we can soar on wings of eagles, run and not grow weary, walk and not grow faint.

A few photos from the trip

I haven't had a chance before now to post pics* of our trip to Santo Domingo. As soon as I got home it became a rush to get get things done at the house, preparing me and the family for Liam and I to be gone for 2 weeks. We decided to move forward and do hbot and watched as God paved the way for this to happen as well as everything just fell right into place.

Liam had his first two dives today and will continue on until March 16th where we'll then return home for a while. We'll come back a month or so later for another 2 weeks of hbot. He does have some tender ears today but drops and diving slow should prevent anything serious from happening.

*Rylie has better photos-I'll have to post those when I get back to the family.

Looking out over Haiti

Traveling buddies

The gorgeous view from our room.

Acrobatic turtles at hotel's fountain.

Bienvenido!

Vials of stem cells ready for infusion.

Infusion taking place.

The thin line is the cath and the even thinner line is the stem cells being released.

Dr. Anthony who organizes everything...amazing guy!

Huge bed for such a little guy down there.

Getting breakfast at the buffet the morning after...no issues from the infusion.

Last view of the country from our window. The soccer pitch had people playing nonstop 18hrs a day.

Heading home!

If you could, continued prayers for Liam would be greatly appreciated...for healing by the stem cells and hbot and for definite miraculous changes in Liam.

Love you all.

Home-final thoughts

What an experience! Liam did fabulous through the whole experience. I still sit back amazed at how it all came together and how I got to watch such a miraculous event take place. I still get chills thinking about watching those stem cells being infused into his brain.

I forgot to mention that Liam got an infusion in his IV as well. Apparently stem cells are different sizes and only the smaller ones can be infused to the brain. The leftover stem cells that are too large are not to be wasted so Liam got two IV drip bags full of those stem cells as well.

He only has minimal bruising now, turning green, and is healing very nicely. You'd never notice the pin prick from where the extraction was.

Bruising and scab from the needle for the extraction.

Beside his birth mark is a teeny incision from the catheter and bruising around.

The staff and doctors there were top notch. Dr. Anthony was amazing and very attentive. After the infusion he sat in the room with us for 2 hours until Liam calmed down. We talked about God, missions, youth of today and where his passions are. He is a devoted dad fighting for all special kids to get better.

He gave me a list of supplements to put Liam on right away.

• HGH
• Piracetam
• DMG
• Hydergine

All supplements to help with brain function.

The Dominican is a "Third World" country but is miles ahead of the USA in regards to it's use of stem cells. We are so blessed to have been able to go.

Flying home I came across this article in Delta Sky Magazine. While not the exact same thing we did, it's the same idea. Using stem cells to heal.

Coincidence, eh?

After wrapping things up with Dr. A. he told me to take Liam for HBOT as soon as we got home. I was thrown for a loop on that one because I thought we were done with 'treatments'. He said, "It's a must." I told him about the sequestration thing going on and how we were going to be losing a lot of my husbands pay next week and that we were all out of money to do anything else. He said to do at least 20 dives if we couldn't do 40. It's the 1-2 punch, he says. The stem cells wrap around those injured areas and cause new connections to be made and the HBOT opens them up to start working.

Please be in prayer for us over this. I have to leave my family for 3 1/2 weeks. It's expensive and of course, insurance nor medicaid covers it. I did talk to the place we went before and he told me he'd give me a cheaper price when I explained our situation and that we were just coming back from stem cells, but it will still be over $4000 to do this (housing and charges). I had no idea about how important it was to do HBOT afterwards and just feel all out of sorts over this unexpected blip in the journey. I was looking forward to getting heavily into therapies for Liam and taking advantage of the few sessions he has left before school gets out. He doesn't get services in the summer.

Whatever happens, everyone knows we witnessed a miracle in Liam getting stem cells. God truly provided in every sense of the word, from the financial aspect to the spiritual, to the emotional to the physical....He had his hands all over this. We are so very grateful to our prayer warriors and would ask for continued prayer for healing and success for Liam. The next 8 months are when we expect to see some amazing things.

Love you all.

We did it!

Im typing this from the ipad so if it looks junky, that's why! It apparently doesn't keep the paragraph form once it posts. >:( I wanted to try to fill in the details of yesterday while they are fresh in my mind. We got to the hospital at about 2:00 local time. After meeting Dr. anthony we we taken upstairs to the fourth floor. We got a really nice room (pictures later cuz I have no way to post them on the ipad) and waiting for them to finish prepping the surgery room. We took Liam to the fifth floor a short time later. I walked with him all the way to the surgery room. We wrapped him in a surgical gown, little booties, and a hat. Which he promptly flung off. Then they took him away. Dr. anthony prayed over Liam and the Drs and the procedure and then we headed back to our room on the fourth floor to wait. I was confused on how the schedule would go because of what I had read. I assumed we would see Liam after they extracted the stem cells while they waited for them to be processed. We didnt. They kept Liam and the processing was significantly shorter than I thought. Dr. anthony came in about two hours later telling me to hurry because I could watch them infuse the cells! We all hurried down the hall (liam was now on our fourth floor) and we walked into this surgical cath lab with big glass windows. Liam was asleep on the table (anesthesia was propofol) and the cardiac interventionist (I think thats what he said he was) was snaking the cath up his carotid on his right side. We watched as the stem cells were released and pulsed through, lighting up his brain. Then he pulled the cath down, went up his left side and released some more. They were at least 4 60cc syringes used for infusing in his brain. They had a container sitting on the table full of Liams stem cells. He sucked them all up until they were gone. The Dr. Showed me the angio-seal used to seal off his artery and then it was done! I couldnt believe how quick it all went. We were expecting hours. Liam was waking up as he was putting in the angio-seal. They do not give any pain meds following the procedure. I dont know if Liam was in pain but he was pissed to be sure. He cried for two hours non-stop. When he gets that mad he snorts and that makes him madder because it hurts him. So the vicious cycle lasted until we got in the van to come back to the hotel. He would not sleep on his back lasst night....would only sleep on his side curled up with me. They hydrated him well, I had to change his diaper 4 times since the procedure. The center where this is done is excellent. Liam had a top notch anesthesiologist who is also a critical care interventionist in the ER. He had a plastic surgeon remove the stem cells and the cardiac interventionist who did the cath is supposed to be one the most highly trained in the world. They have an excellent team here caring for these kids. This center will be going globsl with a news announcement shortly and they expect to get flooded with patients. Im so thankful for what they do here. This procedure cost a fraction of the price it would cost in the US, if they even did it...which they dont. Dr. Anthony has watched stem cells cure alzheimers, lupus, autism, and more. When he prayed over Liam he prayed for "the life blood, the marrow of Liam to heal him because life is in the blood. And jesus gave his blood so that we might have life, let the blood heal" My bestie asked me if yesterday felt like Christmas Eve to me because it felt like it to her. I said it didnt because the momma bear side had kicked in when I got to the hospital and my thoughts were for only in that moment and prayer time kicked in. But i can Tell you that i woke up today feeling like it was Christmas. We have torn through the roof and laid Liam at Jesus feet believing in miracles to come. And i cant wait to watch liam open them.

We're here!

We started out very early yesterday morning to catch our 6 am flight. I had Liam sleep in his clothes so all we had to do was put him in his car seat and go. But little wild man woke right up and stayed awake. We had to get patted down and swiped for explosives because I didn't want then to open Liam's formula and I didn't want him to go through xray. In order for me to get patted down they had to call for approval to do it. By the time they got finished we were the last ones to board the plane. I carried Liam and Rylie carried the seat. She only hit one or two people before a lady showed her how to carry it down the aisle. ;) Rylie sat in front of us, next to a very chatty woman who's husband was a harrier pilot, yet she hated flying. I think having Rylie next to her helped her a lot. Liam did great on the flight. I left his stomach empty so there would be no emotional vomiting from being in a different car seat and not in his car. But he did so good. He loved take off. In Atlanta the Delta boarding dude let me get on first. As I walked by he told me to tell the flight attendants 1b. I did which got us in first class. I was super excited and was finishing up getting Liam situated when a lady come on the plane and said I was in her seat. :( There was a lot of confusion at that point on everyones part and we ended up back in where we originally were. They apologized a lot and gave us first class pillows and blankets and water. Liam did pretty good on this flight too. He fell asleep for about 15 minutes and only fussed for the last 30 minutes when I couldn't get him out. He was done with being in the car seat. When we got off the plane we had to be taken to the immigration area seperate from everyone else because of the stroller. A guy silently put us on the elevator and sent us off. We were a bit confused when we got off the elevator but found the immigration sign and started to stand in line. Aother guy came up to me and spoke Spanish motioning for me to go around the long line. I wasnt sure what he meant, the line was really long, but when I walked around to the side the lady took me right away. What a blessing that was to not have to stand in that long line! We paid for our tourists passes, checked through immigration, and exited to find Dr. Anthony's daughter Rose there to greet us. Another family had come in right before us so we all rode together for the 45 minute drive to the resort. This family has been here before so I was able to talk to her about a lot of the smaller details. It's really comforting to be here at the same time as others. They are doing a different procedure though. Our resort is very nice. We didn't explore though after getting here. Liam just wanted to lay down and play so we ordered room service and got the biggest burgers I've ever seen and relaxed the rest of the night. We will get taken to the hospital sometime around 1 and we will be there for the rest of the day and long into the night. It's going to be a long day with no food for Liam. He'll be hydrated through iv and this evening is when the catheterization will take place for the dispersal of the stem cells. Praying Phillipians 4:6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And Joshua 1:9 have I not commanded you, be strong and courageous. Do not fear or be dismayed. The lord you God will go with you wherever you go. Thank you to everyone who has prayed and continues to pray us through this. I remember you in my prayers and am so grateful for you. I will be grateful to get this day behind us!