Maci Turns 6 in 10 Days!

I have always said, no news is good news, so I know I do not update often.  I never want to be one of those Mom's who update on a regular basis without sharing something of value nor be one to create something more or to be dramatic over something minor.  Maci has remained a "healthy" and happy little girl.
She will be SIX YEARS OLD in ten days.   

Maci had her check up with her kidney doc at LeBonheur on Tuesdy.  I go ther lab results back yesterday afternoon.  We have to increase the amount of Vitamin D supplement as well as give it to her daily vs three days a week.
Her kidney labs are also increasing which is not good.  They were up from our last visit and even more so from the visit before.  Her doc said that if they continue to rise, our first action will be to increase the amount of water that she gets daily.  Simple enough, however the thought of her numbers increasing makes me feel very uneasy.  I have grown VERY spoiled to her being off  of dialysis.  Life is SO much easier......not just for me but for Maci too.  I am trying not to allow worse case scenerios take up space in my head.

We have our visit to Biringham in a month.  Rick (Maci's Dad) is going to be going through the procss of being tested to be a living kidney donor.  He was a previous match for Maci but due to her previous transplant she has created antibodies making a match very difficult and her Dad is no longer a match.  Should all of the testing go well, he will be part of the kidney exchange program with UAB.  Although he is not a match for Maci, he could be a match for someone else and someone tested for that person who wasn't a match could be a match for Maci.  Rick will only donate in the case that there is a match for Maci and we can "exchange" living donors.  Should you be interested in reading more, visit http://www.lkdn.org/paired_kidney_exchange.html

Her doctors at UAB/Children's of AL have also discussed with us in June, desensitization, a process of attempting to remove or lower Maci's antibodies through IVIG therapy.  They recently sent over the information to LeBonheur but I asked her doctor to hold off on moving forward until we speak to the docs in AL next month, especially since Rick is going to be tested for participation in the exchange program.  The unknown makes me nervous.

If you could just say a prayer for Moo and that we patiently let the chips fall where they may. 
Wishing you all a very hapy holiday!

2016 In Review

2016 was a pretty uneventful year for Maci.  She was hospitialized once at the beginning of the year for a few days but the rest of the year she was great.  I think she only had one, lasting cold.  She is also still OFF of dialysis.  It was a good year.
She lost her top two front teeth and started getting her bottom two teeth.  She is still listed for transplant with Childrens of Alabama and we have biannual visits to Birmingham and she still has her regular follow ups with Le Bonheur.  :)

LIKES:

Music!!!

Maci still loves her music.  She listens to Bruno Mars (Uptown Funk), Carrie Underwood & Miranda Lambert (Something Bad's About To Happen) and Thomas Rhett (Vacation) the most.

Dinosaurs
The TV show from the 90's, The Dinosaurs had a baby dino named Sinclair.  Maci loves Sinclair's voice.  She has a 10 minute YouTube video that she fell in love with and I had to replay it every 10 minutes when it stopped.  Thankfully, her brother who is a music engineering major converted it to a sound file and looped it to where it plays for 50 minutes.  I was able to find an app that would play it and LOOP it.  She literally listens to it allllllllllllllllll day.  She will let me know when she's ready for a change and she will listen to her 3 favorite songs and after a while she is ready to change back to the dinosaurs.  She will even mimic many of the sounds from it!

Rumble strips
She loves when I drive over the rumble strip on the side of the road.  It gets her so tickled that she snorts and sometimes laughs so hard that she has to cach her breath.  It's hilarious.

Loud trucks
If she hears a truck with glass packs, or a loud truck take off, she laughs.  Her giggle box gets flipped upside down and she has THE sweetest laugh.

Gun shots
We live in the country and during hunting season it is common to hear gun fire.  I would normally not even notice but she will laugh.  I have a little redneck girl.

Allstate commercial
The Allstate spa commercial, when the guy is getting his chest waxed and he says "guaranteeeeeeeeeeeeeeeeeeeeeeeeeeeeeed", the guaranteed part makes Maci cackle every. single. time.  EVERY time.
 https://www.youtube.com/watch?v=iZ79mmYqNgQ

Law & Order 
The "dunt dunt" you heat on Law & Order makes her laugh hysterically.  You can almost find an episode on any time of the day.  There have been multiple times that she has been drifting off to sleep at night or for a rare nap, eyes are closed and she will hear the noise and smile or make a slight giggle noise.
https://www.youtube.com/watch?v=D9u9kimBDTc

Food
Some of her favorite things to eat are sweet potatoes, squash, green peas, mashed potatoes, bananas, watermelon, cotton candy, frozen greek yogurt (vanilla), Dum Dum suckers, black eyed peas and turnip greens.  (My country girl with a sweet tooth lol.)

DISLIKES:

Zippers
I am not sure why she dislikes the sound of a zipper.  For a short time she acted like it didn't bother her and if I unzipped my wallet she may even laugh.  However, the majority of the time the sound sends her into a panic or a meltdown.  This made wearing warm, footie pajamas a challenge!

The Dentist
Having her teeth scraped would send her into a tizzy.  Her Daddy always had to go with us so he could hold her.  Maci is freakishly strong and always has been.  There are times when I can barely hold her arm down for lab work so to hold her still for 20 minutes would be a chore for me.
I will say she had a visit on January 4th of this year, 2017, and she was a completely different child. She stressed out once but not even over her teeth and it was brief and did't last long at all.

Meat
Maci is still primarily tube fed but I still give her real food.  She WILL eat fish but any other meat, no matter how it's cooked or the texture, she will spit it out.  She remains a self made vegetarian.

Here are some pictures from 2016!

January 

Always dressed out for a Bama game.

February 

She LOVES <3 riding the 4 wheeler!!

March

One night that we took her downtown for a stroll and she loved it.  

April 

Her shirt has It's Ok I'm Jealous Of Me Too on it.  LOL

May

Playing with her favorite toy.

 June 

 A few pics while we were in AL for her check up.

July

August

Styling in her My Little Pony pants.  

September

Day of another Bama game.

October

She is always so happy.  

November

Sleeping......a rare moment.

December

 One of her adorable Christmas outfits.

The night we celebrated Christmas with her brother and sister.  :)

I plan to make a much better effort to update this year.  Happy 2017.

End of the Year Update

On November 30, 2015, Maci lost her first tooth!  It was one of her bottom, center teeth.  It worried me, so I, being the overly concerned mother called her Nephrologist, Pediatrician and dentist.  Maci just turned 4 years old on November 19th and I thought it was too early to loose teeth; apparently it's not.  Better safe than sorry, right?
The tooth fairy has still not visited because the tooth fairy is still in denial!

On, December 14th, 2015 we had our semiannual visit at Children's of AL.  They have a new Nephrologist that we met and he's impressive.  Of course he got my "where did you come from?", "where did you train?" and the other 98 questions.
I was always impressed with Dr. Feig (who's credentials include Princeton undergrad, Harvard Medical and training at Boston Children's Hospital).  He is the Director of Nephrology and Medical Director of Renal Transplantation.  The new doc, Dr. Seifert, also trained at Boston Children's and is involved in transplantation.  He was very pleasant.
So unlike in Memphis, the Nephrologists trained in transplantation are part of the transplant surgery.  I just think this is a neat difference.
The one thing that I love bout COA is that everyone is so nice, detailed, happy to answer any questions and thoroughly explains things in a way you understand.  The surgeon, Dr. Young, is really personable as well.  

No real news to report from our visit.  Maci had grown and gained a little weight since our last visit in June so again, they were pleased that she's growing.  When we were there in June, they had not been doing as many transplants as what is usual for them due to the change in allocating organs.  Since June, "transplant business" has picked up.  Maci still has a high percentage of antibodies so nothing has changed there which continues to make finding a match difficult.  I have never been in a hurry for her next kidney so I remain patient and know the time will come.  My wishing it, or rushing it won't change God's timing so I leave it up to Him.  

On December 23, 2015, Maci lost her second tooth.  It was loose and finally fell out.  Unfortunately, it was either lost or he swallowed it.

Maci has had a great year.  She's been off dialysis for over a year now and it's been amazing.  It is such a blessing, as is she.  She is changing so much and is so happy almost all of the time.  She laughs at herself and will belly laugh and it makes me wish I knew what she was thinking.  She responds to more and is doing more communicating (in her own way).  She still loves music.  We still have to listen to Uptown Funk and Something Bad  on loop but she will change things up with some Veggie Tales and Adele 25.

Maci had a very nice Christmas.  Thanks to Maci's wonderful sponsor, Christina, through The June Brandy Foundation (https://www.facebook.com/TheJuneBrandyFoundation), Maci will be enjoying new toys, new shoes and a new wardrobe!  One of the toys is like one Maci loved to play with but after her getting sick on it many times, it finally stopped working.  She has a new one now and her own "TV remote" that makes sounds that she has found entertaining.  I am very humbled and appreciative of the wonderful gifts provided this year.  Since I am sill in nursing school and unable to work, this was a tremendous blessing.  Unless Maci has a significant growth spurt, she will enjoy her clothes for this winter AND next.  WOO HOO
If you ever want to donate to a wonderful cause, check out The June Brandy Foundation or at least follow their page.  The Facebook link is above.  :)

I can never thank you all enough for your prayers, concern, support and following of and for my girl.  I truly believe she has thrived and done so well because of the outpouring love and support we have for her and my family.  THANK YOU!

ENT Visit - Follow Up from Sleep Study

Maci saw the ENT yesterday as a follow up from her sleep study at the end of July.  She does NOT need to have her tonsils removed.  YAY!

For surgery, they give you a rating.  Before surgery is even considered you should be a 5 or higher.  The ENT said that realistically, most adults are an 8.  Maci is only a 6.  He feels that there are many more risks involved with putting Maci through a surgery and removing her tonsils and adenoids than to leave things as they are.

Her episodes of apnea were very mild and the longer one she had was a central apneic episode.  Central sleep apnea results from your brain not sending the proper signals to the muscles that control your breathing. Her other few episodes were obstructive sleep apnea, which is when you can't breathe normally because of upper airway obstruction.   I asked about the central sleep apnea and if I should be concerned or if she needed to go back to her neurologist sooner and he said no, it wasn't something that I should worry about.  Wheeeeew.

Maci is still maintaining stable labs and remains off dialysis.  It's been 10 months and I am thankful for each and every day that she's had of freedom from that machine.  =)  She is still my happy, joyful child that amazes me every single day.

Here are are few pics that I've snapped over the last couple of months.  We hope everyone is doing great. 

Hugs and love.

 

I can never get her to look toward the camera but she rarely hesitates to smile.   

 

 

My Batgirl at Zoo Boo, benefiting Le Bonheur.

Maci's Sleep Study

Maci had a sleep study last Thursday, 7/23/2015.  I knew the following morning that Maci had "several episodes" but no details.  The "sleep study" doc called yesterday with the results.  He said she has very mild apnea and is referring her to an ENT to have her tonsils and adenoids removed.  While I never want a surgery for Maci, I'm keeping positive in the thought that in the long run, it should help limit or deter infections in the future. This is important now and especially post transplant to keep Maci as healthy as possible.  

Here's a pic of her when she was all hooked up for her sleep study.  She did so well in being patient through the process.  She's even smiling in this picture.  :)

For now, we wait for the appointment with the ENT and go from there.  

Summertime

Maci has been enjoying her summer!  I have had her in a pool at every opportunity.  She. Loves. The. Water.  She even has herself a little bit of a tan.  :)

She's always loved bath time but even more so now.  The other night, after she had been bathed and her hair washed, I turned the water off to get her out of the tub.  She had a meltdown.  As soon as I turned the water back on she stopped crying.  I tried turning the water off two more times and the same thing happened.  I let her spend 30 minutes, laying in the bathtub with the water barely running, kicking and playing.  #spoiledmuch

She's not going to like me much once the pools close.  Her birthday is in November and we've decided to have her birthday party at an indoor aquatic center so she will get to swim at least once this winter.  

Labs last month were good.  We haven't seen Nephrology yet this month due to a reschedule.  Maci has a sleep study this week to see if there is a cause for her not sleeping through the night.  Of course, we changed up her feeding and water schedule thinking she was getting hungry at night and waking up "hangry".  We have been giving her part of her formula during the night for about two weeks now.  The first week was a small improvement but tonight will make one week of her sleeping through the night or only waking up to cry out briefly and she will go right back to sleep.  I guess we had been starving the poor baby.  :(  I have my fingers crossed that this good sleeping streak continues.  

We hope everyone has enjoyed their summer.  I know that this Momma is looking forward to starting her last year of nursing school and Maci resuming her therapies.  We've done work on our own over the summer but we miss her therapists.  

Visit To Children's of AL

The surgeon and nephrologist were very pleased with Maci's growth and weight gain since our last visit in September.  She has gained 4.5 lbs and is 2 inches longer.  **happy face**

There were changes made last December in how organs are "distributed".  It was not supposed to impact pediatric patients but the amount of transplants since December has decreased significantly at Children's of AL.  It will already be difficult to find a match for Maci because of her high antibodies making it more difficult for a kidney match.  It makes me sad that children are waiting longer now.  It's sad that anyone is waiting longer now.  

The nephrologist revisited the conversation on desensitization (decreasing Maci's antibodies to increase her chances for a match).  It's a process and there are risks.  We were all in agreement that it could be an option later on should Maci's kidney failure worsen but because she is doing well and even off dialysis, we will continue to wait and let her grow.  

 

We know that she cannot stay off dialysis forever but in the meantime we take each day we can get and enjoy it.  It has been very nice not having her hooked to a machine every night.  PTL!

Maci is such a good little traveler.  She's never fussed about being in the car but it's not often that she is in her car seat longer than 30-45 minutes.  The 4 hourish trip to Birmingham brought one episode of being unhappy and the same on the trip home.  As long as she picks the music, she's pretty much happy. 

AL bound.

Homeward bound.

There was no room availability at the Ronald McDonald House and we thought we were going to have to reschedule her appointment.  Thanks to the generosity of a friend, we were able to stay in a hotel.  Maci got to get in a pool for the first time!  When Maci was in dialysis and had her dialysis catheter, she could not be submerged in water.....no bathtub, no lake, no ocean, no swimming pool.  Since last December, she has been enjoying baths!  She loves the water, loves having her hair washed and loves being in the tub.  This weekend she had a joyful, screaming fit in a pool.  She even thought it was funny when her face went in the water.  The water was chilly but she still squealed and laughed through chattering teeth.  It was a fun, tear jerking 45 minutes for me to watch her play with her Daddy and to play with her in the pool.  I can't wait for her to have the opportunity to swim again.  

 

Ready to go swim!

 

In the elevator, on the way to the pool.

She had a BLAST!