Two years and counting!!

Hey guys,

Remember when I said no news is good news, well this holds true yet again!! All is well in our little suburbian corner of the world :). We just had a check up for Madi and everything looked great! She had even gained weight finally! She hadn't since we had left the hospital but I just had to use a few tricks the dietitian gave me and sure enough, weight gain! It's so exciting to see her actually gain weight by eating all on her own, she hasn't done that since she was a newborn! It's so awesome! I prayed and prayed that she would gain weight so she didn't have to have a feeding tube again and then all the sudden....she did! God answered my prayers so faithfully and yet then I began to worry that she wasn't gaining weight but just retaining fluid (bad weight). Why is it when God answers our prayers we still question His doings and let evil creep back into our minds!!! Ugh, I hate that! I tried to remind myself of exactly that, she has a new heart now Tab, it makes no sense she would retain fluid! And then today when we went to our checkup I told Madi's cardiologist that I had sorta been freaking out about the weight gain being water weight and he said "that's a thing of the past" ....music to my ears yet again. Worry is the opposite of Faith missy, so STOP that's what I tell myself.... Almost daily. But hey, at least I'm reminding myself right?

We also just got all of Madi's home health therapists set up; she'll have occupational therapy (help with left arm) twice a week, physical therapy (help with her developmental delays due to stroke and all the darn surgeries) twice and week and speeh therapy once a week! So we'll be busy girls! Not that we aren't already but good stuff to keep us focused and on track! I'm excited :). One of the therapists gave me a chart of the things kids should be doing at 2 and I almost cried bc Madi is so far behind (physically but mentally she's totally a two year old!) but then I remembered they don't include the column for 6 open heart surgeries under two years and what that toddler "should" be doing bc it doesn't exist, nothing about that experience is "normal" so she shouldn't be compared to normal, and then I felt better :). If they did have that column there might be two kids in it and she'd be doing everything and more than expected, thanks to Him :)

Anyway, last week we celebrated Madi's second birthday and it was a day I will never forget! A day that I wondered countless times if it would ever come, a day I thought we might celebrate in the hospital, a day I thought I might be grieving the loss of my precious daughter instead of celebrating her life? But here we are, celebrating this day that is full of life and happiness! Wow! What an understatement that is! I can't even describe what it means to wake up and scoop her up in my arms the morning of her birthday and sing "happy birthday" something I hope I never take for granted. Let's just say birthdays in this house will always be a big deal after this journey :). It was truely a joyous day; we had a camera crew here finishing a story they were doing on our little M&M but most importantly we had two of our nurse friends from TCH join the party. I call them nurses but they are more like Madi's miracle workers who we love and cherish and can't thank God enough for! Just another piece of this miraculous puzzle and of course they spoiled her rotten as well!

Last thing I wanted to mention is all the support from our amazing community back home! Growing up I never could have imagined how such a small community could rally around those they care for! My aunt organized a benefit for Madi and ended up getting over $6,000 in donation from our small hometown. I'm completely speechless and don't even feel like thank you is enough! Just know each and every one of you that has so graciously donated to and prayed for our M&M holds a special place in my heart. I will always call this community my home and know it has helped us get through this hard time. Austin and I plan to put all the donation into a college fund for Madi, I'm sure she'll want to be a doctor someday!! Lol, yeah right!

Well, that's the latest!! A photographer from TCH came and took pictures during Madi's Bday but I haven't gotten them yet so I'll post them once I get them! I hope you all are doing well and enjoying the end of summer (I can't wait till its over.....too hot in Texas for this Wyoming girl, but won't miss the snow during the winter!). Love you all and don't forget to sign up to be an organ donor!!

Tabi

Home sweet home!

Hey Guys!

Oh my goodness I can't believe the last time I posted was right after Madi got her new heart, jeez I've really been slacking!! Sorry! Im sure most all of you already knew we were home via FB or word of mouth etc. but yes after 220 days we finally got to bring our baby girl home!! It was a very similar feeling to when we brought her home when she was first born, just so exciting and something we'd been waiting and waiting for! She hadn't even been to our new house yet so it was even that much more special. After all she had overcome, it was just a great feeling to walk through that door with her in my arms :)

That was two weeks ago already and so far so good, or so great, I should say! I cannot believe how much Madi has blossomed, it is truly amazing. I never really knew how much her heart failure had been affecting her until I saw her with a healthy heart. Up until now, Austin and I could hardly squeeze smiles out of her and now she's all smiles all the time! She has gone from taking two to three naps a day to only one and if she's not sleeping she's wanting to go here there and everywhere! The only problem is she hasn't yet figured out how to do that on her own so mom is getting plenty of exercise :)! She slows down from time to time to watch the newest episodes of Mickey Mouse Clubhouse but that's about it, otherwise she's busy trying to figure out how to get movin:). Since we've been home she's started rolling, cruising on the furniture, turning on her bum, saying Mama (not just Dada), scribbling with a pen, working on her sounds etc. etc. she truly has been given a new life. She has progressed more quickly than I have ever seen, isn't that just awesome! She's got a lot of work to do with physical, occupational and speech therapy but now that she's got a strong heart, all of the milestones will be a lot easier. She would probably be crawling already but she's still tryin to figure out what to do with "Leftie". This is her left arm's name bc it kinda does its own thing and doesn't like to participate so we've given Him a name:) It's a he bc he never listens and you have to tell him over and over what to do!! Hehe :) That said, her stroke affected side is doing better and better and getting stronger each day! She'll figure out how to make it all work for her just might not be as easy as it would be otherwise!

We had a clinic appointment a week ago and everything looked good on her echo, heart was functioning very good! On Monday she will go to the cath lab for her second biopsy which is where they actually take a tissue sample of her heart and then send it to the lab to check for rejection. The scale of rejection is 0, 1R, 2R and 3R. A month ago her rejection was 1R which is nothing the doctors worry too much about or even treat in addition to what she already takes twice a day to prevent rejection. If the biopsy is a 2R or 3R she would be admitted to the hospital for IV med treatment to help get her out of the 2 or 3 and back to 1 or 0. This is something we will monitor for the rest of her life, just not as frequently the further out she gets. They'll also be checking her lung pressures as she still has what is called pulmonary hypertension that is a result of her old heart. It's basically scar tissue in her lungs that we have to treat with meds and oxygen and just wait for it to get better over time. If she was an adult we could forget it, they wouldn't get better but bc she's so young and resilient the lungs should heal. I'm really dreading the cath lab on Monday though; we have to be there at 6:30 am which means leaving our house at 5:30, sending Madi to cath about 7:30, she'll be out at prolly 10:30, recovery for about 2 or 3 hours and then just wait till about 5:00 pm for the results! Whew, they are long days! At least we don't have to drive from Rock Springs to Salt Lake and back like we used to! That was even worse! Ugh. It also brings back way too many emotions going to the hospital I hate it! I wish I was stronger and could overcome them but I haven't yet, I'm praying about that one! A lot! I think with time and God's help it'll get better.

Anyways, that's what's goin on lately around here! I hope you all had a great 4th of July and enjoyed time with your family and friends. We enjoyed celebrating our first holiday outside of the hospital since Halloween! We're praying it's a trend for a long time to come :). I wanted to quickly thank all of you for the cards, gifts, thoughtful letters, messages, food etc. that you have sent! If I haven't sent you a thank you card in the mail please forgive me I appreciate each and every thing you all have done and it brightens my day! I have been blessed with amazing family and friends! Please pray for Madi's donor family as she would not be here if it wasnt for their precious gift and for Madi that her cath lab on Monday will go well!!

Love,
Tabi

P.s. sign up to be an organ donor :)!!

The Greatest Gift

"This happened so the power of God could be seen in him". John 9:3

Hi Guys,

I can't believe I'm actually writing this post right now!!! The post I've waiting to write for seven long months to tell you all about Madi's new angel heart!!! Its still so surreal, I can't believe how fast things have gone from "we're gonna be here forever, and there is no end in sight" to "we've gotten a new perfect heart and we'll be going home sooner than we know it!" It's just an amazing, scared, sad and awesome feeling all at the same time if you can imagine. I can't even describe the feeling you get when you find out someone else has chosen to give your child life even though their own child's was so severely cut short; this is the biggest act of selflessness that I can truly think of and for that I feel that thank you is not enough. I don't know anything about our donor family other than they are amazing people who have allowed our little girl a a new lease on life. No longer will she have to struggle to catch her breath every hour of the day, no longer will her stomach constantly feel upset because it wasn't getting enough blood flow, no longer will she feel like she can't stand up and play with her toys because she is too tired, no longer will she feel hot and sweaty all the time because her poor body is always working over time and no longer will she only get ice chips when she is thirsty because her body cant handle extra fluid! Our baby girl will get to experience what life is meant to be not what it has had to be the past 22 months. I hope someday our donor family will come to know just how great this gift is, just how deeply grateful we are and how much this has changed our family's life for the better. I do not know what it feels like to lose a child and I hope I never do, but I do know my baby girl has knocked on death's door one too many times and for that I realize how precious life is
and how huge this gift of life is to us!

I want to thank you all for your outpouring of love, support, prayers and undying faith through all this. I couldn't believe my Facebook page on Tuesday when I told you all the news, it was just awesome to see how many of you have been praying for her!! It brought tears to my eyes every time I logged on just to see how many of you care for her! And thats just Facebook, not the countless others out there who I know are praying for Madi but I don't get to directly communicate with. It's so wonderful and I can't thank you all enough! Your prayers are what have brought us so far and we will continue to need them as we embark on a whole new journey.

Madi has done amazingly well through the first 24 hrs with her new angel heart; the doctors warned us before surgery that the heart may struggle against her high lung pressure (consequence of her native heart disease) and she would probably come out on a temporary assist device for the new heart while it got used to her body. Well, her angel heart didn't need any assist device and was beating so strong against her high lung pressures that her surgeon couldn't even explain it!!! This little heart was hand picked for our little M&M no doubt about it. Her surgeon said he had never seen a transplanted heart do so well against such high lung pressures! Isnt that just awesome! God's handy work was yet again all over this one :). "This happened so the power of God could be seen in him" John 9:3.

She has done great so far but we still have a long recovery ahead of us. The first 3 months to a year are the most critical months for rejection so once we do go home we will have numerous trips to and from the hospital to make sure her anti rejection meds are working as they should. Most transplant recipients deal with rejection throughout their life and take medications every day to keep their body from rejecting the organ. She will have ups and downs, good days and bad days and best case scenario her heart will last until she is in her late teens and she will have to get another transplant or an artificial heart if they have such a thing by then. But it is all a million times better than what she has been dealing with since the day she was born and we will take each day, month and year as they come with open and grateful arms :)

In the mean time, I can't believe that we will get to go home sometime soon!!! Austin and I bought our new house in November but as a family we have never even lived in it! It doesn't even feel like "home" yet but once Madi is there it will shed a whole new light on things, I can't wait! It might be a month or so until she is outa here but hey, at least there is a light at the end of the tunnel:) Once we're home we won't be able to have many visitors or take her anywhere for that mater as she will be so immunosuppressed that it is just too risky to expose her to many germs, so if you don't get to physically see her for quite some time that is why! Luckily, I am a huge germ freak and don't mind it so hopefully that will help (or hurt.....I haven't decided yet, lol) but she's pretty much been on house arrest a large majority of her life so it won't be anything new to us. Just overjoyed at the thought of sleeping under one roof with my hubby, baby girl and two big dogs :)

Well, that's about all I have for now! I can't thank you all enough for all the prayers and please continue to pray for Madi as we are not even out of a very critical period right now. She has done great so far and will only continue to do so through God's watchful eye. I hope you all are enjoying the start to your summer!! Oh and.......if you aren't yet an organ donor please please sign up:)!!

Love Tabi

Learning

Hi Everyone,

I'm happy to report we are out of ICU and have been for 3 weeks now!! Woo hoo! It's been so nice to be out of there; no constant beeping, noise and lights but some peace and quiet where we can rest and just hang out together on the couch and watch 101 Dalmations, Madi's all time favorite movie by the way. No big surprise though, she's obbssessed with dogs, mostly big dogs, can't imagine why that would be?? Lol, yes we do Face time with her brothers Huck and Kodiak at the house when we can so the three siblings can see each other :). Madi tells them "hi" when she sees them, so cute!

Anyway, all is going very well here, we're maintaining and just waiting for her gift to arrive! Really trying not to think about it and just keep going on each day because if I think about it I wonder, when will it come? Why hasn't it come? What a terrible day that it will be for the family who donates but a great day for us? That in itself is difficult to think about! So, when I start to go down that road, which I clearly have, I just try to quickly get off it because it doesnt get me anywhere but anxious and upset "So dont worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today" (Matthew 6:34). Isn't that the truth! Today has enough to deal with to worry about tomorrow. Duh, so just worry about today, no big deal! I wish it was that easy but it's not supposed to be easy I guess; learning to use our faith in God instead of our own strength to get us through each day (each week, each month, each year etc.). Again, something I admit I am really crappy at but I'm getting better each day I think. I've always been one to think that nothing is done right unless I do it myself, but what if what you want done is your baby to get a new heart? Obviously I can't do that myself so it becomes pretty clear that not only can I not accomplish that task on my own but really who was I kidding prior to Madi? I can't do anything by myself, I have to let go and let God. Again, I really wish It didn't take my baby needing a heart transplant for me to learn this! Whoever knew and didn't tell me where were you! I'm sure I was told I just never listened. Funny how that happens!

This whole experience has made me a completely different version of myself, I don't know if it's a better or worse version, just different. I told Austin once, I feel like one of those soldiers you here about coming home from war where they struggle to live a normal life. We havent been to actual war but we have been in a battle to save our daughters life since the day she was born. It's something that forever changes you and makes you think about life in a completely different way. We, like soldiers, have seen and done things that no parent should ever see or do but yet I think it has made us more appreciative of the life we are currently living because we know it can be a lot worse and Madi can be a lot worse. I just hope that never changes and we will continue to see the good and not the bad in each situation we are dealt. I will say that God gave me the best partner for this battle because Austin has a special gift for seeing the light even in the darkest of times. It doesnt mater what it is but he has a way of making things seem not so bad, just another gift God handed me; this gift just happened to be walking down the hall at RHS about ten years ago and caught my eye. I did have to stalk him a little in the end and ask him on a date myself but hey my "nothing is done right unless I do it myself" attitude worked out for at least one thing, lol :)

Over all we are hanging in there, making the best of each day and just glad Madi is doing so good! Our main focuse right now is Physical and occupational therapy, which are going well. We're just trying to build up the strength in Madi's legs that she lost after being sick for so long and having a stroke. Her left leg is really functioning well, almost as good as her right that wasn't affected by her stroke. Her left arm is a little more of a struggle but we knew it would be from the start. It has limited function but we're working on it and if I had to choose between the arm or the leg I would hands down choose the arm because we need the leg for walking, which the doctors say they have no doubts she will do with time :)

Sorry for such a long post, guess I had a lot to share! Thank you as always for all of your thoughts, prayers, gifts, phone calls, texts, meals, etc. that you all have sent our way! We couldn't survive without you!!! I've attached a few recent pics of Madi as well!

Love Tabi

Back to Life!

Ok my apologies, I know it's been forever since I last updated but remember when I said no news is good news, well in this case it is! Madi is doin great and continues to make great strides in her miraculous recovery! We are still in the ICU mainly bc she has been so tumultuous to manage (and bc everyone here loves her to pieces) but the docs just want to make sure she is stable for two full weeks before they send her to the step down unit. It would be a great change for all of us here on "team madi" but when she is ready she will go down!

Last time I wrote I think she was still on Cpap and I hadn't gotten to hold her yet. Shortly after that she went to a high flow nasal cannula and I was able to hold her for the first time in 53 days! Those 53 days were the hardest of my life; Although I put on a good front and tried my best to act happy every second Madi had her beautiful eyes locked on mine I was empty inside. A mom that can't take care of her child is a mom that is dying inside; a mom who so desperately and instinctively wants to calm and comfort her baby but can't. It's was pure torture. But I can tell you that the moment she layed in my arms after all that time and just fell asleep bc she was so comfortable, every ounce of life I ever had came flooding back to me! I cried that day, tears of joy. During those 53 days there were some when I wasn't sure if I would ever get a chance to hold her again but God brought us back together and we both have life again :)

Its so great to pick her up when she cries, to comfort her, to pat her bum, to bounce her in my lap, to feel all 14.5 pounds of her go completely limp bc she has fallen asleep on my shoulder. Oh the joys of being a mommy again :). Below I've attached a few pictures of her here and there and as you can see she is doin so great! She's a little star around here and has visitors each and every day just ooing and aweing over how great she looks and how adorable she is! She has made great progress in physical therapy and occupational therapy as well; she can walk, she can move her left arm, has recently starting trying to grasp with her left hand and started saying "hi" again too! Mind you, these are all things that were damaged by the stroke that she had but her little brain has already figured out how to use other uninjured parts to rebuild what she lost, it's just amazing! She has the tiniest little pink brace for her left leg when she walks bc the muscles are somewhat weak due to the stroke but it only took 24 hrs to get her used to it and now she just walks like it's not there. Still a lot of work and rehab to do but we'll get there eventually! In the mean time I'm doing my best to become a makeshift physical therapist, occupational therapist and speech therapist by asking lots of questions and learning all I can to help as she does a lot better when it's just her and I than when there are people around she doesn't know.

Still waiting patiently for her gift to arrive but trying not to think about it and just praying God will bring it to her when the time is right. Another thing to add to our list of miracles that I thought you guys would like to know; Madi gets her blood drawn every couple weeks to test and see how sensitive she is to other tissues (ie how sensitive she would be to a new organ, lower is better bc you don't want to be so sensitive that you'll reject everything). Anyway, before this whole Berlin thing her sensitivity was 28 which means she is sensitive to 28 percent of the population and could accept an organ from 72 percent of the population. Normal is like zero to ten but bc she's had so many surgeries her body becomes more "on edge" and sort of in fight mode compared to the rest of us so the sensitivity tends to go up the more surgeries, blood transfusions (she's had countless) etc. a person has. Well, they tested hers again last week and they had gone from 28 to zero!!!!!!! Wow!!! Isnt that awesome! I mean God is really planning this all out to give her the best possible chance at life! This means she can accept any organ that is a match for her :). Awesome!

That's about it for now, I hope you all are well and enjoying spring time! Keep up the prayers bc try are working wonders for us! Thank you doesn't seem like enough!


Love, Tabi

For the Greater Good .....

"And we know that God causes everything to work together for the good of those who love God and are called according for His purpose for them." Romans 8:28


Hi Guys,

It's been awhile since I last updated the blog (as usual,sorry) but a lot has happened since last time! A lot of GOOD things that is! Little M&M is finally extubated and doin great! She is currently on CPAP but should be switching to a high flow nasal cannula today (it's closer to a normal oxygen cannula just a little higher flow). Anyway, it took us seven weeks to get here but none of that maters, all that maters is that we made it! This is huge step for her :). God has given her so much strength to overcome everything she has endured, I am just amazed!

We've come a long way, it's just crazy what Madi has been through in the last seven weeks, well 19 months if you think about it. My last post we were about to extubate her but she actually "coded" again a few days later. This time it wasn't as bad as before because she had the Berlin giving her cardiac output even though the right side of heart was freaking out somewhat. The day before this event she was weaned from one of the narcotics she had been on for a month and this caused her to be tachycardic all day with a heart rate in the 150's (classic drug withdrawal). This isn't good for a normal heart to do all day long so a heart in bad shape really doesnt tolerate it and it just got tired and decided to slow way down. So, after a couple doses of epinephrine and an entire night of low and high heart rates it finally decided it felt better and started beating more normally by the morning. She would have been in much worse shape if she wouldnt have had the Berlin helping her to maintain a good blood pressure and stable pulse through all that! The next few days after that were followed with kidney and liver dysfunction due to the stress of the event most likely as well as another treatment for pneumonia! I know, lovely huh, but just remember she's much better now and all that stuff has resolved......thank you Lord :).

After all that it was time to tackle extubation again and she finally did it! I think everyone was worried that she wouldn't be strong enough and they'd have to reintubate but she did great! of course :). Then on Saturday she had a huge blood clot in her Berlin so the doctors had to take her to the OR and change her pump out, otherwise the clot could have dislodged and caused another stroke, ugh! But God protected her thought that as well. It only took them 48 seconds (which is their record time, gotta do it fast bc there's absolutely zero blood flow to her body during the time they change it out). she came back from OR with a shiny new pump with no clots in it! We've finally gotten over this huge hump and we're in a much safer place now! Whew!

Anyway, I started out with Romans 8:28 because I read it the other day and it got me thinking about how our little baby girl has brought so many people closer to God. And I'm only talking about those of you who tell me how much of an impact she has had on you, that doesn't even include everyone else who hears about Madi and prays for her. I don't know if I'll ever understand why God chose her or why He chose our family but if anything I know that I find peace in the fact that Madi is God at His finest; her "broken heart" has healed so many and brought them closer to Him, I mean isn't that the ultimate goal,to bring as many to the Lord as we can? If that's the case, Madi is certainly in the lead however physically behind she may appear. Although this whole thing really sucks and I'm totally over it and just want to take my baby home I draw upon this from time to time to help remind me what we're really doing here, working together for the good of those who love God :)

Oh and last thing, she is at the top of the transplant list! If any offers come in within a 500 mile radius she's the one! Last week two offers came in and she wasn't at the top of the list but now she is. Praying for a gift of life :). Thank you again for your continued thoughts and prayers!!

Love, Tabi

Two Steps Forward, One Step Back

"I can do all things through Christ who strengthens me." Philippians 4:13

This is my new favorite verse, it's short which I love because I can remember it, and it says everything I need to get through each day! I was reminded of it this week in one of my daily devotions and it came just at the right time; I don't need to be scared because I know that God will give our family strength to win this battle. Even if I have to recite this to myself three times a day everyday it helps me to know and remember, God is right beside us!

I start with this verse because the last few weeks have been "two steps forward one step back" type of weeks. Madi is still intubated and every time we think she's about to get the tube out, something comes up that sets her back :(. It's been frustrating to say the least but it's so helpful to remind myself how present God is in our lives. Literally everyday something happens that lets me know He's here. Its so awesome :). That said, Madi is doing very well, she's come a long way over the past six weeks. She was so sick you guys, we never really knew how sick she was. Even way back at her first birthday she was sick, we just didn't know because she couldn't tell us and she compensated so well. That's why it's taking her longer to get better this time around, she really needed her Berlin heart and God intervened before it was too late. Her lungs were sick, her heart was very sick and she just kept on goin till she couldn't anymore, but now that she has the help she needs all of that is slowly getting better, it just takes time, soon I'll get to scoop all 14 pounds of that little squirt up in my arms, I can't wait!

I can't even tell you how sassy she is! It's so funny! Everyone has noticed how big her personality is, and how strong this little peanut is! She actually sits up in bed on her own with a breathing tube down her throat! Her physical therapist said she has never seen a kid do this before and be so content and playful while being intubated. She's so strong it's just jaw dropping actually. The other day we filled up a bin of water and she played in the bubbles like a crazy girl, her surgeon even came by to try and play with her and she glared at him like "excuse me who are you and why are you touching my bubbles?". Lol, it was pretty funny!

Anyway, her lungs are a little congested with extra fluid so we've taken away some meds, added some others and that should help, once they're dried out then she can get extubated, hopefully soon!! Once she's extubated she can get up and movin, which will be so much better for her stroke rehabilitation. We've seen some really nice movements from her left arm and leg which is so awesome! We have to hold down her right arm and leg to make her move the left but if she really wants to she can, which is very reassuring!

It seems so normal to be talking about all this stuff because it's just our everyday life but on the rare occasions when I do actually leave the hospital I realize this is so not normal! Our life consists of ventilator settings, oxygen saturations, physical therapy, echo's, chest X-rays, fluid balance.....the list goes on and on, but out there the world is still going on, everyone is living their lives and I am reminded how real this all is; yes my baby is really sick and yes she is fighting for her life each day, she's waiting for a heart transplant!!! What?? Sometimes, it seems so normal I forget how serious this all is! I was reminded last week when a 7 year old boy lost his battle with congenital heart disease. He had been fighting for so long and the Lord called him home. I had met his mom and although I don't have a clue what it feels like to lose a child I do know that it scared me, I do know that Madison and this little boy have a lot more in common than any other normal babies out there, I do know next to him Madison has been here the longest. This all just makes it too real, that yes children do lose their battle with CHD and families have to go on without their precious babies, it's just too close for comfort. It made me stop and realize how easily that could be us. It made me realize that although I get frustrated with "two steps forward and one step back" at least we're moving forward, even though I cant hold Madi now, at least I will get to soon. And most of all, I dont know what tomorrow will bring so I'd better darn well live for today! I find comfort knowing that this boy who was our ICU neighbor at one time is no longer in pain, he is no longer short of breath, no longer too tired to even hold his head up, now he is running, playing and enjoying his time in Heaven until his family arrives. Our future is uncertain, nothing is a guarantee, it is my job as Madison's mom to live for each day and remember that this is only our temporary home! (but I'm selfish sometimes and want her here with me forever.....I'm working on it :)

Hope this update finds you all well! As always, thank you for your thoughts, prayers and love! We couldn't do it without you!

Love Tabi