Sunday, December 27, 2015

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!

Tuesday, October 13, 2015

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.



Wednesday, July 29, 2015

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.  

Tuesday, July 21, 2015

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.  


Tuesday, June 9, 2015

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!

Wednesday, May 27, 2015

Do You See What I See?

Maci saw her Ophthalmologist on April 29 and she wrote her a prescription for glasses.  Yep, glasses.  We've always known she had some light perception....she has always closed her eyes in bright light or out in the sun.  She's great about keeping sunglasses on and will keep her eyes open while wearing them.  Dr. Hoehn decided to have Maci try glasses and see what they could do.  She made no promises and said if they didn't work for her at least we've tried and there was nothing lost.
We picked up her cute, little, pink glasses today and they are adorbs! 
Once they were on, Maci kept blinking....almost like batting her eyelashes.  She kept acting differently and smiling and laughing and "talking".  She followed a light for her Daddy and later followed my finger. It's been an exciting day!  I do not think she will be watching TV but I believe she does see more, sees something, with her glasses.  It's been fun to watch her today!
Too cool to look towards the camera. 
On our way for our monthly kidney doc check in. 
Yea, they won't help much this way, Moo.

Wore out!

We shall SEE how things go and in the meantime, enjoy the summer.


Saturday, April 25, 2015

A girl, her wheelchair and a bag of salad.

Maci's labs are STILL stable after 4 months and she has still not had to go back on dialysis.  That's God's work right there.
 
Our last hospital stay in December, the PT started the process of getting Maci a wheelchair.  I nearly cried at the suggestion.  I knew she needed one for spinal support and to help in improving her head control but it was still bittersweet.  I thought for sure my sweet girl would be walking by age 3 or at least be sitting independently.  Having a wheelchair ordered for her was a tall drink of reality.  

Her new crimson red ("Roll Tide Red") wheelchair was delivered Thursday, April 16th.  We had to sit her in it for the company delivery man to make adjustments and she seemed to really like it.  We took "baby steps" over the next few days in having her spend time in it.  She continued to enjoy it. 
First time in her new wheels. 

Having a blast on the front porch with her "laptop". 

This week I took her to the college for a student jazz performance.  It was her first time to wheel around in public and she did great.

spent the day today, working on my last speech for the semester; a persuasive speech on organ donation. ♻️ When I finished, we took a family trip to Walmart.  Maci has always disliked stores....Walmart, Target, Kroger, Children's Place, it didn't matter the type of store.  
It's never been an issue because I don't like to take her in crowded public places very much but tonight we put her in her wheelchair and hoped she wouldn't mind a quick trip in the store.  The "quick trip" lasted an hour and she was happy until the very end of the grocery list.  That unhappiness was resolved by giving her a bag of salad to hold.  Taking it away to scan it resumed the quivering bottom lip and sobs.  I had to find it and give it back to her and she was happy again.  
I was thrilled and so proud of her for doing so well!!

Who knew that a wheelchair would allow her to be so content!!!???  I feel guilty for not getting one sooner. ♿️