Thursday, June 28, 2012

Update coming

I intended to write a detailed update tonight about my recovery from surgery and Keegan's report from transplant clinic today.  But unfortunately, we came home from the hospital with Keegan this afternoon to find Audrey throwing up with a low-grade fever and feeling pretty puny.  Needless to say the little bit of remaining afternoon was not spent the way we intended.  I will get an update out soon, but tonight, this is all I can get out.  Audrey will stay overnight with my parents to try to keep her separated from Keegan.  We don't need him contracting a virus that causes his MAS to flare, and frankly, a stomach bug would not be good for my recovery right now.  So, I ask for a few prayers, if you don't mind, for Audrey's recovery and Keegan and my safety at this time.  Thank you so much.

Wednesday, June 20, 2012

Here goes nothing

Well, tomorrow I get to say goodbye to my gallbladder.  Thank, God.  I'm beyond ready to be through with this.  It really is "nothing" that is going because according to the tests and doctors, my gallbladder is doing absolutely nothing but stewing.  Ugh.  Thankfully, I only have to wait until 11am tomorrow to start feeling better.

When I start to get nervous about it though, I just have to look to my kiddos for a smile.

See Exhibit A.


Friday, June 15, 2012

Playtime

We've been trying to let the kids swim every weekend while Keegan's port is deaccessed.  Last weekend, that meant the baby pool and sprinkler time and a visit from Oma and Pops.  Ya gotta love summer!










Thursday, June 14, 2012

BooksmART at the DMA

Last Saturday, we met Aunt Alex at the Dallas Museum of Art for the annual BooksmART festival.  It was a fun day of free admission to the DMA with lots of arts, crafts, music, and book readings.  My uncle, Chris, was in town and met us there for a yummy lunch and dessert from the food trucks outside, too.  It was so nice to catch up with him; I wish I had snapped a picture! 






The best part of the morning was the concert from our friends at HugWorks.  They play at Children's often and have brought us many smiles over the years.  It was nice to listen and enjoy their music outside of the hospital for once! 







Tuesday, June 12, 2012

Catching Up

I don't know how many times I can apologize for being a bad blogger.  Luckily, this time it's because things have been going ok.  Keegan has been outpatient for exactly one month as of today!  That is a HUGE accomplishment for him!  I haven't gone back to check the calendar exactly, but I think that may be a record for 2012 so far.  Needless to say, we have been pretty busy during that time.  We dove head first back into his usual speech therapy, started behavioral therapy (his "school" to address issues caused by strokes/brain damage/autism), and started physical therapy (to rehab his muscle coordination and strength from the former and develop a plan for post-flare stiffness).  

In addition to being outpatient, he's also managed to stay off TPN for the last few weeks!  We recognize that Keegan's intestinal failure is directly related to his immune dysfunction.  When his immune system is under control, his GI system functions pretty well, but when the immune system acts up (most of the time), his GI system is rather useless.  At the moment, Keegan is experiencing a bit of a remission, so to speak, and has been able to maintain low but acceptable electrolyte levels.  As soon as that is not the case, we will slowly add the TPN back in, and when he is doing ok, we will titrate back down/off.  It puts Gray and I bit on edge, always looking for "signs" that things are not right between weekly lab draws.  However, it is the best thing for Keegan.  Since his kidney can't clear all the fluid, we have to chase it with diuretics, which raises his blood pressure and will hurt his kidney even more in the long run.  For now, we are just trying to enjoy the time we have TPN-free.

We had an appointment with the rheumatologist last week, but it ended up not amounting to much.  The genetic labs and inflammatory pathway labs we need have not come back yet.  We can't make any decisions without them at this point.  Phone calls were being made, and we have rescheduled.  Hopefully, we will know more soon.

With all of Keegan's appointments, it is hard to find free time during the week.  But we have rearranged our schedule as much as humanly possible to make sure there is one morning per week free to do something fun.  So far, we haven't done anything earth-shattering.  Feed the ducks.  Go to a new park.  Go to the library.

  Last week, we went to Science Storytime at the Frisco Discovery Center.  It was a little low-rent, but the kids enjoyed it.  





Audrey also started some "gymnastics classes".  I hesitate to call it gymnastics quite yet, but it is certainly prep work for real lessons.  She has a BLAST though, so it's definitely worth it.  They are at the gym where Olympic Gold Medalists Nastia Liukin and Carly Patterson train, and it makes me feel like an absolute lazy bum whenever I walk in!  



We also have been doing a lot of playing and enjoying time as a family.  For Audrey, this lately means a lot of dress up.  I love it!





I guess I'm glad things have been a little quiet for Keegan lately.  I hope that didn't just jinx it because I really need a few more weeks.  You see, I have a little problem with my gallbladder.  It quit on me.  Quite literally.  I had a nuclear radiology scan of it (a HIDA scan, for those interested) two weeks ago, and it is not contracting enough to hardly be quantifiable.  I had an upper endoscopy done yesterday that will rule out celiac disease and found one small lesion/ulcer.  Today, we met with the surgeon, and I am at an extremely high risk of developing a gallbladder infection due to all this.  So next Thursday, June 21st, I will have the darn thing taken out.  It will be done via robotic laparascopy.  It should be day surgery with a 3-5 day recovery period.  Quite simple in the grand scheme of things we have been through with Keegan.  I would definitely still welcome and appreciate your prayers for this procedure - less for me and more that Keegan stays stable while I am temporarily out of pocket.  

Once again, I apologize for not being a great blogger lately.  I do have some more pictures to share soon, which I hope will get me back posting again in a more regular fashion.  Thanks to all of you who continue to check up on us and keep us lifted up in prayer.  Even when I am a lazy blogger.  ;)  

Wednesday, June 6, 2012

Our Ladybug is 2!



What a light you have been to our lives the last two years, sweet Audrey!  We have enjoyed beyond measure watching you learn and grow into a little lady this year.  You have endured many hardships this year.  Yet you have shown us time and again that you are brave, strong, loving, funny, and and a true daughter of the King.  Your heart is enormous and pure through and through, and you are so smart.  Not a day goes by that we don't end the day talking about the amazing things you have done or accomplished.  Your smile and laugh light up a room and our hearts.  We love you so very much, and we pray this next year brings more joy, love, and laughter each day!  Happy birthday, baby girl!

Monday, June 4, 2012

Audrey's 2nd Birthday Party

Our little Miss Sunshine is turning 2 on Wednesday!  Last Saturday, we celebrated sweet Audrey with a "You are My Sunshine" themed swim party at my parents' house.  I think everyone had a great time, especially the little Ladybug.  She never has a hard time being the center of attention!  ;)

It was such a blessing to have our whole family there and feeling well.  If you remember last year, Keegan was pretty much discharged from the hospital just for Audrey's party, felt horrible during it, and was readmitted later that night.  The length of the day wore on him after awhile this year, but he really did great during it all despite the commotion.  We had such fun with our friends Noah, Brady, and Carter!  We wish the Harrises, Loredos, and Millers had been able to join us.  A HUGE thank you once again to Mamie, who as usual did a simply amazing job decorating, planning, and hosting such a perfect party for our little Sunshine!