Good kidney news and Heart Mom Lesson #10

Things have been going much better since my last post, that was a lot of bad stuff all at once.  I was beginning to feel like we were cursed!  The past two weeks have gone much smoother.  We did have one bit of really good news.   Abby had 3 lab results in a row that showed that her kidney's weren't functioning at the level they were supposed to be.  Each time we did labs, it got worse.  Finally, last week, her labs came back with her kidney function in the normal range!!  YAHOO! We really needed this good news!  The only thing we are still worried about is that Abby has had a pain in her lower back and side area on the right side.  It's lasted over 2 weeks now.  Before we got the good lab results, we thought it could possibly be kidney-related.  Both an ultrasound and a CT-scan showed that her kidneys looked good.  But, the pain won't go away.  We've almost ruled out everything now, so we're thinking that maybe it's just a strained muscle, but who knows for sure.  It's so tender that she won't even let anyone touch it.  We're trying a couple of other things and hopefully we can figure this out.  It really stinks because the only thing we can give her for pain is Tylenol, and that does nothing.  It's so frustrating to see her hurting so much but not knowing why and not being able to fix it.  I just want her to stop being in pain.  Other than that, Abby is doing well.  She's going to school every day, getting straight A's, and trying to play soccer-for as long as her back will let her anyway.  We don't go back to clinic until November 5th, that's hard to believe.

As for the rest of us, Britt is loving her classes at Dixie State and working hard to maintain a high GPA so she doesn't lose her scholarship and so that she can get into nursing school.  She's also still loving being a CNA!  We are going to schedule her to get her tonsils out over Christmas break, it has to be done as soon as possible, but she can't miss school, so Christmas is the best time-Merry Christmas Britt!

Brock's football team is doing well.  They lost to Dixie last week, but it was a close game, it could've gone either way.  Brock works hard, he starts O and D line in the games so he doesn't get to rest a lot.  It's good for him, but not easy.  He's a little beat up after the games, but not as beat up as the guys he's going against!  I'm always proud of him, he never complains, even when he's playing injured.  The kid loves football and always has....and he's so cute too!

I am loving teaching school again.  I was worried going back because last year was so hard, but I feel like myself up there teaching, just like I used to.  I have great classes full of great kids, and great teachers to work with too.  I couldn't ask for anything better.  I'm also writing a book about everything that happened to us this past year and a half.  It's not easy to write it, it's like reliving everything over again, but it's helping me to remember all of the amazing and miraculous things that happened to my family and how we coped with these things.  I just finished the chapter about the day Abby had her transplant, I bawled the whole time I was writing, what an incredible day full of so many emotions.  Hopefully, when I'm done writing, I can find a publisher that wants to publish our story.....I have to pay for this transplant somehow!  But, to be honest with you, I've never written a book before.  I really don't have any idea what I'm doing and I have no idea what to do after I get done with the writing.  But, like everything we've been through, I just feel like things will fall into place just how they're supposed to, I just need to keep writing.  I'm also down 20 pounds :)

I think I'll end this post with a little thing I came across on another heart blog.  Most of it applies to us, and I thought it was perfect.

Heart mom lesson number ten...

Forget who you were...and who you have been,

Life is about...to take a detour,

And you will be shaken...to your very core.

You've just found out...something's not right,

How will you make it through this plight?

What can you do? What should you expect?

Of life with a child...with a heart defect?

Heart mom lesson number nine...

You'll learn to say...things are just fine,

When people stop... to just say hi,

There will be days...you long to cry.

Bound by worry, fear, and stress,

At times you'll think..."I am a mess",

You'll smile, thinking...can they tell?

Then say..."thank you we’re doing well".

Heart mom lesson number eight...

You'll learn just what it means to wait.

Patience is a virtue right?

Who really needs to sleep at night?

A hospital room... not a permanent state,

As each day passes... home must wait.

Patience is knowing...things won't stay the same,

Patience is accepting...a changing time frame.

Heart mom lesson seven here..

Our children's futures still aren't clear,

Innovations continue to thrive,

Each year more children will survive.

These children...and their families,

Will rise to fight...these CHD's.

Research...is imperative,

Our kid's deserve a chance...to live.

Heart mom lesson number six....

It's clear life holds no easy fix,

If life were perfect...in every way,

I guess...I'd have no need to pray,

I'd still be living...blind...and dim,

Forgetting...I must lean on HIM.

I cannot change the way things are,

But prayer makes God...seem not so far.

Heart mom lesson number five,

Cherish this day...your child's alive.

Today we frolicked in the snow,

(Did he like it? hmmm...well...no)

I watched him smile..as snowflakes fell,

I thought...thank God...he's doing well,

A bundled boy...warm hat...one glove,

No doubt about it...this is love.

Heart mom lesson number four...

There is always time for more,

More messes that need cleaning up,

More cartoons on tv,

More yes...I'm gonna tickle you,

(The best things remain free)

More bubbles in the bathtub,

More stories...one more song,

More this little piggie went to market,

One more...just can't be wrong.

Heart mom lesson number three...

Their special hearts...help us to see...

Did I always understand?

That God holds our lives in his hand?

Before my child...I took for granted,

The gifts in my life...that God surely planted,

Before my eyes...I missed them...how?

My heart child came...I see them now.

Lesson number two...take heart...

It is okay, to fall apart... 

It's not easy, we don't know...

Will we watch our children grow?

God looks to his angels...saying see why I chose her,

She's never afraid to lose her composure...

In her heart...she feels defiled,

But nothing will stop her... from loving her child.

Heart mom lesson...number one...

It must be said...we're never done!

That day...will never come you see,

We'll always face uncertainty,

But I will face each day unknown,

Taking heart...I'm not alone,

These lessons... remind me to cope,

Stand strong...believe...and always hope.

~Stephanie Husted

A trip to the emergency room with Britt......we are now done, we've had enough.

Happy Birthday to Britt!  I can't believe I have a 19-year-old!  Britt is an amazing kid, I coudn't ask for a better daughter.  She makes my job of being a mom easy!

This has not been a good week, in fact, it's been a really, really lousy week.  On top of Abby's clinic news and Brock's car being backed into and dented at school, I also got to take Britt to the emergency room in Riverton last night! 

This past week, Britt had been getting sicker and sicker.  She had a bunch of swelling in her neck and chin area, and the her neck started getting really stiff and sore.  Then she started having a hard time swallowing and she couldn't turn her head at all.  We tried to just ignore it and hope it went away, she had these same symptoms twice in the past 6 months.  We were just watching and hoping for no fever.  But, unforunately, on Saturday, as we were driving back to Salt Lake to attend my nephew's missionary farewell, Britt spiked a fever.  As soon as my dad saw her, he said it was time to take her to the emergency room, and it's a good thing we did.  After taking some blood for labs and a CT Scan on her throat and neck area, they found that Britt had an abscess in her left tonsil.  How do you treat an abscess in the tonsils?  It depends on the size.  If it's 1 cm or bigger, it has to be drained surgically, anything smaller than that is first treated with antibiotics to see if that will bring down the size, before having to surgically remove it. The size of Britt's abscess was 9.7 mm, now that's cutting it close!  They gave Britt some IV antibiotics, as well as pain medicine and some steroids.  Thankfully, we got to go home that night, with strict instructions that if it gets any worse, we needed to go right back in.  It was a relief to finally know what was going on with Britt, I had really started to worry.  The not-so-good news is that because Britt has had this 3 times in the past year, and each time it's gotten worse, she will need to have her tonsils out the next time she has a break from school.  From what I've heard, this isn't the most fun thing to do when you're Britt's age.  Just another surgery we'll be looking forward to at our house.   Today she is doing a little bit better.  The biggest problem is that she has a lot of pills she's supposed to be swallowing, which is hard to do when you have an abscess in your throat that makes it so you can't even swallow your spit very comfortably.  Hopefully, things will get easier for her soon.  This is not a fun way to spend your birthday!

At least we got to attend my nephew's farewell and visit with family and friends for a little while before we got back on the road to get Britt home.  Zach, you gave an awesome talk and you will be a successful missionary!  Hearing him speak was definitely the highlight of our not so great week.

 As I started driving home, I was feeling a little better about things, and then I saw the cop hiding behind the construction equipment on I-15 holding his radar gun pointed right at me.  Every time I've been pulled over, I've been able to talk my way out of it and only get a warning, but this guy didn't even give me a chance.  In my defense, he was sitting directly in front of the "end of construction" sign and within 100 yards of the 75 mph sign.  But, that didn't matter.  20 miles per hour over the speed limit in a construction zone could be a hefty ticket.  He should have looked at my record and seen that I haven't had a ticket in 20 years, and if he would've known how many times I've driven that road in the past year and why, he would've had some sympathy.  But, he didn't even give me the chance to play the "Abby" card.  So, I guess it just goes to show that even when you're doing a good deed, you can still be punished.

 Honestly,  after this past week, I can't help but think, "Are you kidding me?? When is it enough?? Is there some reason I'm not supposed to just be happy?? " I'll admit that I've been feeling a little picked on. I'm not sure why I keep having to deal with so many things, but it sure seems like it might be somebody else's turn for a while.  I feel like I've rebounded really well through everything this past year, but, it's starting to get a little harder to do.  I just want NO excitement, nothing, for a while.  It's been 2 years, almost to the day, since Britt tore her ACL.  It seems like that was the beginning of all of this.  Before that, we were just normal.  I think 2 years is enough, we are done now.  We've had enough.

Some good news and something to worry about......

I know, I know....I think this is the longest I've gone without writing a blog post, but that's because things have been so good! We've been in school for 4 weeks now, and Abby has only missed one day; well actually today was her second.  She's already been in school more days this year than she went her entire 7th grade year.  She's loving it, but she does get tired, it wears her out.  It was good to hear from the transplant team today that she's not the only transplant kid with this problem.  Hopefully, she'll get more used to it as the year goes on.

So, we had clinic today, we haven't been there for 5 weeks!  We had to have labs drawn last weekend because we made some adjustments to Abby's meds because her swelling in her feet and legs has gotten so much worse since school started, so we wanted to make sure all of her labs were still where they were supposed to be.  So we didn't have to have any blood drawn today, which was a nice change!  We did have to spend time at the Moran Eye Center to follow up on Abby's CMV.  Thankfully, things looked perfect, it didn't spread to her eyes, so we're all clear as far as her eye's go.  The eye doctor actually said that if we WANTED to come back in 6 months, we could!  We both just laughed, like we would really want to go back if we didn't have to!  It was nice to cross that problem off of the list though.

After our time spent at Moran, we went back to finish clinic.  Abby had already had her echo, so we just needed to talk to the transplant team and the doctors.  It was actually fun to see them and catch up a little bit, it had been a long time.  They said that Abby's echo looked good, in fact, perfect.  We talked about her pulmonary hypertension again, it's not going away and they pretty much told me today not to plan on it ever going away.  Since we're a year out of transplant with no change, it's probably not ever going to change.  Dr. Molina was so patient and gave us a whole lesson on what pulmonary hypertension is and why it causes Abby's feet to swell.  We have a few things we can try, and if things get worse, we might have to make some med changes in the near future, but we have a bigger issue to deal with first. 

Last time we were at clinic, I heard them mention that Abby's kidney function was down a little, but nothing to worry about, they just told Abby to start drinking more water. Today, Abby's kidney function was down more than just a little, it wasn't good.  They discussed referring her to a nephrologist (kidney doctor).  We decided that Abby is going to work really hard on increasing her fluid intake,  then she's going to have labs drawn again in two weeks.  That will then help us determine what we'll decide what to do next.  This could also be adding to the swelling in the feet and legs.  I know that her anti-rejection meds are hard on her kidney's, but I didn't think this was anything we'd have to think about and deal with for 20 years!  Nobody knows why Abby's already having some problems, I guess it's just Abby's way.  We're just going to start praying now that in 2 weeks things will look better and we can put this problem to rest for 20 more years.

So....... heart function=good.  Blood counts=good.  Other labs=good. Eyes=good. Pulmonary hypertension=not so good, but it is what it is, we can cope.  Kidneys=not so good, our biggest worry right now.   Next clinic date=good.  Two whole months until they need to see us again, unless things don't look good with her labs in two weeks.  

It was an exhausting day, clinic and all the driving make me tired.  Tomorrow it's back to school and and then I have to spend time dealing with the insurance companies.  A girl decided not to look while she was backing out of the school parking lot a couple of days ago, and crashed right into Brock's car and left a big dent.  Brock did a great job taking care of things until he could get a hold of me.  I don't always look at my phone while I'm teaching school, so I didn't even know he called, so he called the insurance company and the cop and started the process.  What a great kid!  Tomorrow we drive to Cedar City to watch him play football, which is always fun, then Saturday we head back to Salt Lake for my nephew's missionary farewell that's this Sunday.  It's been a crazy week, and we're just getting going!  If you see Abby anytime soon, tell her to get a drink!

Abby's Make-a-Wish star-raising party

Last week we were able to make a trip to Salt Lake that wasn't for a clinic visit!  We got to watch Brock play football in Syracuse, well kind of play, his foot is still healing so he only played half the game, but played great while he was in the game, and then we had Abby's star-raising party at Make-a-Wish.  We were lucky because almost all of my family was able to attend, we were only missing my sister and her husband and kids.   We took some pictures to show the party!

Abby go to be the star of the day!

This is the table where everyone was able to sign Abby's scrapbook page that will always stay in the books at in MAW.  We can go back anytime and see it!

We spent some time watching Abby's trip video that Britt made.  We loved seeing the video and remembering all of the fun we had!

Abby's page, I love the pictures she chose!  This will be a great reminder of those who were able to attend her party.

Learning all about the history of MAW, what an incredible organization.

All of the stars.  Each one represents a wish that was granted to a deserving child.

We were able to show everyone the game we played that helped us determine Abby's wish.

The wishing room!  

Even though Abby didn't get her first wish, I think she got the perfect wish for her!  It all worked out perfectly!

Ab getting ready to raise her star, she chose an orange one because there weren't very many that color.

raising her star :)

The Lambert crew!  Thanks to everyone came to support Abby.  Next time we are in Salt Lake and my sister is there with her kids, we get to stop by and show them MAW too!

It was a great party, and I have to admit that I'm sad it's over.  We are so grateful for Make-a-Wish and all of the people that donated that made it possible for us to go on our wish trip.  The trip was a major turning point for me.  Up until then I was still feeling a little stressed out and lots of worry, but getting out of town and spending time just having fun, was exactly what I needed to get out of that rut.  I came home feeling completely refreshed and ready for what comes next.

Today, I also want to post a poem that I read on another heart mom's link this past week.  While I was sitting watching Abby play soccer yesterday, I was reminded of what an inspiration she is to me.  She has taught me numerous things this past year, things that I probably wouldn't have learned if we wouldn't have had the experiences we did!

Behind your scar

Sometimes I have those "moments",

When I think...life's just not fair,

Then I think of all you've been through,

.....And I see the scar you bear.

A faded line right down your chest,

Made with such careful precisioin,

We wanted you too have a chance,

Could there be any other decision?

And so I trace that "perfect" scar,

Made with the utmost care,

And I realize there is purpose,

Behind this scar you wear.

What have you taught us?

You've taught us how too face a storm,

(Something are just out of our hands)

Life has no handy guidebook,

(Things don't always go as you've planned)

People come into our lives,

(Sometimes it is just for a season)

But God brings them into our lives,

(And I know that He must have a reason)

Normal, uneventful days,

(The kind that we always hoped for)

These are the days I say, "Wow God",

We just never know what lies in store.

If I can place a feeding tube,

Without even getting distraught,

Perhaps, maybe, I might be...

Much stronger then I thought.

It's okay to be afraid,

And it's alright to cry,

It's okay to feel lost sometimes,

It's even okay to ask...why?

You face life with courage,

(Knowing God set you apart)

Every little thing you do,

You do with all of your heart.

No crystal ball exists for us,

(To see us through each strife)

We only have one wish for you...

An ordinary life.

You've taught us to love one another,

(Helping each other to cope)

You've taught us compassion for others,

You've taught us to never lose hope.

You already have quite a story,

Which you can someday share,

And I see it's beauty,

Behind that scar you wear.

Things are good right now.  We have been to school for two weeks now and other than some feet and leg swelling every day, Abby is still healthy!  We still even have another 10 days before we head  back to Salt Lake for clinic!  We're just hoping and praying this good luck continues!!

Here's to things being NORMAL!!!

So, what's been happening around the Doman house the past couple of weeks?  Just a whole lot of NORMAL, that's what!!  Finally, it feels like we are just back to our normal routine, and I LOVE it!!

Abby hasn't been sick for a long time, she's been healthy and feeling good....other than a little problem with turf toe anyway.  No really, it's called turf toe.  I went to pick her up from soccer last week and she was crying and could barely walk.  She had been complaining all week about her big toe hurting, the final diagnosis........turf toe.  So, soccer has been put on hold for a little while.  But it has nothing to do with her heart, so it's okay, we can deal with turf toe.  Abby went to her first day of 8th grade just like any other normal kid!  I think she was a little nervous, she hadn't really been to school for almost a year!  She came home happy and excited.  And look how healthy she looks too, I love how she's so proud of her scar and isn't afraid to show it, in fact, she likes to buy shirts that show it off!







She's loving just being a kid again.  A lot of the hype at school, the whisperings of, "Hey look, it's Abby Doman!"  have finally died down and Abby can just be Abby again, not "the girl that got a heart transplant."

Brock has his first football game tomorrow night up in Syracuse, so as soon as I'm done with school tomorrow, we're making the drive up there to watch.  We just can't stay away from Salt Lake!  Brock's foot that he needs surgery on is holding up really well, it's really not giving him too many problems.  His other foot, the one he injured about a month ago, is having a hard time healing.  I think it will be okay at the game, but I worry about him pulling it again and having to start the recovery over again.  We'll just hope for the best.  Be sure to cheer for Desert Hills #77 this year!  He'll be playing on both the O and D line, and I think he'll be fun to watch this year.

This is a picture of Brock and a bunch of his buds at the Desert Hills Meet the Team night.  This is one of those things that I had to miss last year, so I just love every second of being able to be there now!  I love this group of boys, there's just something about them that you can't help but to like!

I think it was weird for Britt not to go back to school when everyone else did this week.  She doesn't start her classes at Dixie State until next week, but then she's going to be extremely busy.  Between her night shifts as a CNA, volunteering in the ER,  her class workload, and the GPA she has to stay above to keep her scholarship, she's going to have lots to do.  But, if anyone can do it, it's Britt.  She's always so motivated and determined to do what needs to be done! I'm proud of you Britt!



As for me, I'm back to school too.  It's been a busy week of getting ready for school to start, but the first couple of days have been so good.  I'm so grateful to be able to start the year with my classes and to be able to be a part of everything again.    I know I was there last year, but is was so hard because I was gone so much, and I was still so focused on Abby and her needs, that I didn't really get to enjoy my job like I used to. I can honestly say that I've loved the first two days of school, it feels like it did before this all started, and that feels good.  And just on a side note....Mama Doman is down 10 pounds and counting!  I finally decided that after spending a year taking care of everybody else but me, it's my turn a little bit again.  I'm hoping that my face and body will shrink as much as Abby's did from when she was on steroids, to now:

So, here's to things being NORMAL!!!  I don't care if things get better than they are now, I just want them to be stable for a while.  Our next clinic day has been moved to September 6th because we had to add a follow-up visit to the Moran Center with the retina specialist to make sure that when Abby had CMV that it didn't do any damage to her eyes, which it sometimes can.  I'm not worried about that at all, I think it's just a precaution.  That means that after this weekend, we still have almost 3 whole weeks before we have to make the trip up again!  Love it!

I want to end with some amazing, miraculous news.  I've posted a lot about the 3 kids that have been waiting for hearts at PCMC.  Finally, last Monday, Abby's heart friend Kaidence got the call.  She received her heart the next morning and everything is looking good!  We couldn't be happier for Kaidence and her family.  Kaidence is 5 years old and this is her second heart transplant, she is truly a miracle.  Now we need to keep praying for little Matthew and Kylie to get their hearts.  Three transplants in 3 weeks is what we're praying for!







Florida Video

Britt made a video from the pictures and video we took in Florida.. Go check it out on Youtube! Click here

Things really are getting easier!

Abby's new soccer season started last week!  She was able to go to practice last Monday and she loved it!  She knows she's got a lot of work to do to get stronger and get back in shape, but she's ready for the challenge.  I can't wait to see her when she finally gets back in shape, it will be the first time she will be able to run and have her heart work correctly, she'll feel so good!  She doesn't have her first game until the end of August so she's got some time to get ready.

The main problem we're having right now is keeping Abby healthy.  Luckily, it's not the big, get admitted to the hospital kind of illnesses, it's just the "normal" things.  The day after soccer practice, Abby woke up with a horrible cold with a sore throat, and she's just barely getting better.  She was pretty miserable for a few days, but hopefully we're past that now.  This worries me a little bit because we have school starting next week, and schools are just huge germ factories!  I feel like we're doing everything we can to keep her healthy, but those immunosuppresants are just tough on Abby.  Hopefully her immune system is getting stronger, despite all of the meds.  Abby is excited, but a little nervous to start school next week.  She really didn't get to go to very many days of school last year at all, so I think it will be good.  It will be weird not having Britt go to school when the rest of us do, she's still got a few weeks before she starts going to Dixie State.  She's still loving her CNA job, she comes home with lots of good stories.  I hope that all of the hard work she's doing will help her get into nursing school in a couple of years.  Brock is doing okay, today is the first day he doesn't have to wear the boot for his ankle.  Hopefully, next week, which is the week of their first game, he'll be ready to play.  It's been hard for him to stay off of it, he's ready to go.

We did have clinic again last week and everything looked good!  Her creatinine was a little low, but we aren't going to worry about that.  I think Abby and I both went into shock when we asked when she has to have another cath done.  We were thinking it was coming up, but unless there's a problem, she doesn't have to have another one until next May!  One a year!  I think we can do that.  We also don't have to go back to clinic until September 10th, we are down to one month apart visits.  Everyone told me things would get a little easier when we got to the one-year point, and I'm actually starting to believe them.  Driving home from Salt Lake I couldn't help but to breathe a huge sigh of relief, I felt like things are going to be okay for while, things really are getting easier.