Addison's ABR & EKG & New Tubes

Addison was quite the busy girl this morning - she had her ABR (auditory brain response...it's a hearing test that doesn't require her to have a cause/effect response - for example she hears a noise and turns her head...in the ABR she sleeps and a machine measures her brain's response to the sounds coming in).  The ABR was slightly worse overall than it was 6 months ago, especially in the right ear.  The right ear did not show much loss at all (all of that was within normal ranges) at birth.  Last September there was a mild, high-frequency loss.  Today her left ear showed some additional loss as well, probably 50 - 60 across frequencies.  We don't have the official auditory report yet, that was just the info straight off the exam without the buffers for machine noise in.  In September it was 45 - 50 with an outlying 60 in.  We will wait for the official auditory report and then get a new referral for her audiologist (the off-base one) to have an appointment to adjust her hearing aids.
While she was sleeping, the ENT agreed to look at her ears and clean out any wax or goop that was in them.  There wasn't much in the way of fluid (thank goodness given her runny nose!) but the tube in the right ear was just hanging around in the ear canal - not where it belonged, just dislodged and hadn't come out of the ear yet.  The left ear's tubes was also looking like it was on it's way out so he replaced them both.  In addition to the ear stuff we coordinated the EKG that her geneticist wanted done, this could be done awake if Addison was cooperative to having 12 leads put on her and laying relaxed for an extended period of minutes - this is not happening with her so doing it while she slept made it more reliable.  I am not sure what the EKG showed - we were given a copy and it looks "normal" to me I guess...though that doesn't mean squat!  I'm assuming it wasn't anything too concerning since it wasn't brought up.  The ENT was kind enough to print me a copy to take with me for our records.
Addison woke up without fits and seemed relaxed.  She wanted her IV out of course, but was okay when it had to be in a bit longer.  The nurse who took off the IV let her pick what color tape she wanted, blue or pink, she chose pink of course!

Pictures from Sunday - finally!

Quick Update

First - sorry no pictures - they are giving me serious issues loading!  UGH!  I will figure it out soon I think, or hope.

Tuesday we had a busy, full day of appointments.  Addison had her pre-op appointments with ENT, the nurse, the pre-op nurse, and anesthelogist and her well baby check.  Josh had his dermatology appointment and then we had to do the admissions stuff for Addison's ABR and EKG and also pick up the packet that we needed for today to get her blood drawn.  Yeah - not the best day!  Wanted to update though on appointments - everything looks good for the ABR getting done.  They are also going to clean out her ears of any wax or junk while she's sleeping and check on her tubes.  Typically they should last 12 - 20 months and hers have been in for 15 months.  The ENT (the base ENT, not her normal one) that he wasn't sure if they should go back in if they were on their way out - I informed him if he was asking my opinion that I absolutely wanted them back in.  Her poor head isn't draining super with them in.  I'm not ready to see if she needs them, I'm pretty sure she does.  Also, they are doing the EKG while she's sleeping - this is at the request of the geneticist.  We have tried twice to do an EKG while she was awake, imagine if you will her detest for all doctors and nurses and her needing to be restful while leads are attached to her - yep not happening!
Her well check was okay - though the base rescheduled it for us with a different doctor.  I was not happy about that, it was a resident that we had not seen.  I probably came across as a pretty firm momma, but oh well.  I was nice, just informed him that I expected these questions answered and if he didn't have the answers he could have her PCM get back in touch with me within 72 hours as per their policy.  The resident was actually good...one I'd see again so that speaks volumes!  We discussed a possible OT consult, her early intervention teacher has voiced concern several times on some pecilur posturing of her hand and her preference for her left hand.  Given that we are already fighting brain atrophy...I am on the side of being more cautious.  We were on the wait list for early intervention OT - and happened to get the call to schedule during her well check (we were put on the list in Decemember).  Addison is growing though!  She is 31.5 inches tall (50%) and 21 lbs (7%).  Yeah!  They said her head had grown (from 42 to 43 cm) however, I'm 95% they had her hearing aid in the measurement...not a big deal. 
I also was really pleased with the dermatologist on base, which again is great news.  I'm getting particular about doctors that see my kiddos, they have to know their stuff or I want a second opinion.  Josh's skin is getting so-so again...we discussed starting 2 new ointments, one for his face that we've used in the past and another for all over (also that we've used in the past, just a bit stronger).    I'm glad to know though that this doctor wants to follow-up with him and seems to have the same ideas that we have about getting his skin better.  We need to get more strict on hydrating his skin 3 - 5 times a day with ointments...he hates to have it put on though and it's sometimes tedious.  We're going to keep at it though because it is worth it for him to feel better.
In other news, today we went and had more blood drawn for Addison.  I am so glad that this should be it until July though!  Oh, the poor baby.  I hate that she has to go through it, I really wish there was another way to get some of these answers, but there simply isn't.  Addison has had I think 5 or so blood draws and she knows exactly what is going on and isn't cooperative at all.  It took 5 grown adults to be able to get the blood drawn today, and 4 tries.  They asked after 2 tries if we just wanted to wait a couple weeks and try again - I said as much as I hated to have to have her stuck again, we really needed to get the blood drawn and get it sent to the lab for analysis so no I'd rather get it done now.  I don't think she'd be any more cooperative the next time.  They are doing mitochondrial panels this time in addition to some other tests.  I think that they are looking for deletions and flip-flops in her DNA as well as the lactate.  Tomorrow is the ABR and hopefully that goes smoothly!

Waiting...but not in vain

It has been a great weekend, there was lots of fun, lots of girl time, lots of family time.  Couldn't have asked for a better weekend (some minor bumps in the road of course, but there always are).  So I found it strange when my heart and my head started to feel heavy, worried.  Thursday we got word that Addison's blood tests were approved and by Friday I had talked to her case manager about getting the written order that her PCM would write, a packet we had to take the lab, and a number of a very  helpful lady at the lab that would help us make an appointment on the right day.  Apparently, there are highly specialized/specific instructions on how to handle this blood draw and the time frame that it can take to get to the lab that will complete the testing.  The tests are expensive, I'm sure everyone wants it done right the first time.  Suddenly though my mind has wondered - what if this...what if that..what if this and that...what do we do now?  I was no longer able to focus my thoughts & energy on ensuring that the process was going smoothly to get approval and apparently I felt the need to spend that energy somewhere and that somewhere was the "what if" questions.  I tried to dismiss them, but wasn't having great success.  Pray, I kept telling myself, pray.  I admire Mike's ability to handle the unknown, I admire his courage and his faith.  He doesn't have any more answers than I do, and he's okay with that - he knows that we'll handle whatever the future holds and that we won't ever be alone to handle it on our own - he trusts that God will provide.  I trust that too, yet my mind wonders.  It's discouraging, it's frustrating and not how I want to feel and handle things.  I prayed, and then prayed some more. 
Yesterday was busy, we decided to go to church Sunday this weekend instead of Saturday.  Yet this morning, our relaxed morning was just that relaxed and we lost motivation.  A phone call asking what time we were leaving had us scramble to get ready, glad for the encouragement and a bit of a kick in the butt!  Oh - I am not patient, I do not like waiting, but can I just say that when you wait on God - he ALWAYS shows up!  There was a video clip before the sermon and a verse - John 14:1 "Do not let your hearts be trouble.  Trust in God.  Trust also in me."  I sat there thinking, okay I'm listening.  Then the ending songs repeated that to me.  "Strength will come when we wait upon on the Lord, when we wait upon the Lord."  I love that God always shows up, when I stop and listen and pay attention.  So I feel like I'm not going to sit and wait on the lab results, I'm going to wait on God to show up and guide us on this crazy, love-filled, wild, wonderful journey and appreciate that the rain is needed for the flowers to grow; that fire is used to purify our faith and strengthen us to not depend on our own strength but on the strength that God has and will always provide. 

Sibling Love

Today has been a covers on the couch and cartoon kind of day at our house.  Noah's cough is getting worse (though it's a bit better this afternoon) and he's got a fever, I'm achy with chills.  There's something going around, no big surprise it found us and really not so bad.  Well Josh has been SO cooperative and helpful!  He's asking Noah if he wants covers or a drink.  Whenever Addy starts saying eat or dink (drink for those not familiar with Addy speak) he goes to the kitchen and ask her what she wants.  Once he brought me the fruit loops, then some crackers, then her sippy cup, the milk from the fridge and chocolate powder. 
Well while I've been laying on the couch, I have been surfing the internet looking at various photography sites and links, trying to get better.  Anyway, since the newer laptop is acting up and waiting to be rebooted we've been using the older one.  I couldn't wait to upload pictures from Monday and Tuesday so I loaded the Canon software to edit.  Decided after some browsing I wanted to shoot in RAW and see what I thought.  Oh - I love it for indoor shots with no flash!!  So while lunch was heating up, Josh was entertaining Addy (who recently has decided she wants to use her high chair again) and I decided to snap a couple pictures in RAW to edit.   Such better editing results when the light wasn't super without all the graininess. 
I love these pictures of the two of them - they are going to be trouble together!  I love how close they are though, they pretend together and play together.  Josh has taken on the role of big brother so well, he adores his baby sister.  Addison adores her big brothers, too.  I think there's something special between them, they have some of the same passion and humor and I hope continue to be close as they grow up and remember these sweet moments. 

Lunch Date with Daddy

What a nice surprise during a busy week at work for Mike we got a treat and got to meet him at the park for lunch.  Mike picked up lunch and met us on our way back from getting Addison's new ear molds.  It was a bit cool (even cold I dare say for spring in Vegas!)  Thought I would share a few pictures from our adventures, the kids are growing like weeds (I think that Josh may have grown 2-3 inches since Christmas!)

Roos N More Zoo

The playgroup with MOPS did a trip to Roos-N-More Zoo this morning and we had so much fun!  It's a zoo owned/operated by 2 veterinarians who practice in Las Vegas but have had a growing number of animals in their care full-time so now they share their home with the 160 animals and also the public.  It's not a typical zoo but was definitely a good time.  The day was cool and really windy, which was a bit of a bummer but we made the most of it.  The best part was there were so many animals that you could touch, fed, and even hold.  A great experience, and we got to share it with some of the other families from MOPS and two of our best friends, Braylen & Tucker!  There were lots of pictures, I had a hard time weeding them out - when else are we going to be holding monkeys, petting camels & kangaroos?  So there's a link on the side to all the pictures but here are a few of my favorites.

A Morning at the Park

Playing McDonald's & taking orders

"Kids Next Door...Battle Stations!"

Addison is climbing everything she can!

A Few Updates

First I am so glad, thankful, and feel so very blessed that we have doctors on Addison's team that really seem to care about her.  Today has been a day that I have been impressed with 2 doctors!  First, the base audiology clinic referred Addy off base for her ABR.  That would be fine with me, I'd be comfortable with that especially since it was because the base audiologist was going to be gone for a long TDY.  The big problem with that though, there isn't an audiologist off base in Vegas who accepts our insurance that will do a sedated ABR.  I called Addison's case manager, explained it and said simply I wanted to let her know, I'd call to recheck that information with the off base audiologists but knew that if it couldn't be done on base we'd have a bit more complicated process.  Addison's case manager called the base audiologist directly to see her recommendations for off base.  Turns out that the audiologist on base wants to squeeze Addison in before she leaves if at all possible.  It will take coordination of course, she has to have an ENT able to sit in on it and be able to schedule the OR for the procedure but she's going to try and get that all worked out before she leaves because she felt it was best for Addison to have it done sooner and didn't want to require us to travel for something she could do.  I'm touched, because long TDYs aren't fun and there's so much I know that must be on her plate at work and home to get finished.  The audiologist on base continues to be a bright spot at the hospital - I can't wait to leave a shining comment card for her when we are there again.
I also called Addison's endocrinologist today and left a message to see if the lab results were back.  A nurse called back and said that they were back and she'd leave a message for the doctor to call me.  By 4:30 I figured we'd hear from him tomorrow.  I wasn't upset by this, just that it'd be tomorrow.  At 8:30 my phone rang, it was a blocked call, usually I don't answer but did and it was Addison's endocrinologist.  Really?  Wow, he has a family and I can't imagine how busy he is with work and his family, again just touched that it was important enough for him to call us tonight.  The results weren't all back, he didn't have the critical sample (I hope they drew it, I gave the lab all the paperwork and just assumed it was all done).  Great news is that her growth hormones are fine!  Whoohoo!  There were some low results though with the carnitine level.  Carnitine plays a roll in the break down and transport of fatty-acids.  Very borderline as a whole, but some other breakdowns of it (or at least from what I could tell it was some breakdowns of it) that were below normal.  Her level was 28, that is the lowest "normal" and he feels that it is playing a role in the blood sugar fluctuation and growth concerns.  He called in a supplement to our pharmacy that we can pick up tomorrow.  He also is going to have the nurse mail us the lab slip to have it retested in 4 months to make sure that the dosage is correct (she's starting on the lower end of what is allowed so there would be room to increase it).  We'll add 2 TBSP of corn starch to her juice before bed for another 2 or 3 weeks and then stop because the carnitine supplement should help keep the sugar level after that.

Videos

 

Silliness

 

 I think Addy likes pillow pets

Josh and Addy reading

Valley of Fire

Mike had the day off today and we decided to head to Valley of Fire State  Park which was only about 45 minutes north.  It was a gorgeous day and we all had so much fun.  Noah really, really, really loved climbing all the rocks!  Josh enjoyed himself too, but there were times that he didn't want to go quite as high as Noah.  I was okay with that, suddenly things make me nervous when my babies are doing them!  Addison seemed to really enjoyed herself too unless she wasn't able to climb on the rocks like her brothers.  Seriously, this park was GORGEOUS!  How on earth you can question God's grace and love being surrounded by that beauty is beyond me.  I am sure we'll make a few more trips to the Valley of Fire before we leave Vegas - we have some grandparents coming to visit in April and September and I'm pretty sure we'll be dragging them there. 

Yes - I was a bit nervous with them all that high!