Sunday, February 19, 2012

A New Button!

Last Sunday was quite eventful!  While Waverly was having her afternoon feed, I heard a strange noise that I knew was a stomach noise, and looked down to notice her feeding tube had come out of her stomach!  My family was visiting for the day, so after shooing everyone to go upstairs, we called the GI doctor on call and had him paged.  Since I wasn't sure how long it'd take him to call back, we went ahead and got out her new Mic-Key button kit, and I gloved up and went ahead and put the new button in!  The funny thing is, she had an appointment that Thursday with the GI doctor in which we were going to put a new one in.  Silly girl just didn't want to those extra 4 days!  I knew that eventually I would do it myself at home, but I was hoping to be able to see the doctor do it for the first time at least, and I didn't want to have to do it in an emergency situation.  But, it all worked out.  Johnny was right there to help and together we got her new button in just fine.  Yeah team! 

Sunday, February 12, 2012

Heart Thoughts-Letting Go

Sometimes it's just the little things that make this journey difficult.  The unexpected that find you blinking back the tears, frustrated because you weren't expecting the emotions at that time, sad at the circumstances that bring up those emotions.  (For instance, putting away our Christmas decorations broke my heart.  I had no idea until I was doing it, wondering if she'd ever see them again...)

We sold the crib this week.  It didn't even hit me until we were taking it down and the other family was taking it out, piece by piece.  We have had a crib in our home for over 5 years.  And we still have a baby who should be using it, for a couple of years still at least.  But here we are letting it go.

We have to let so much go.

It's not that she couldn't use it, but we had the amazing blessing of being able to get a SleepSafe bed for her, so we are taking that opportunity.  We are so thankful for that.  But we had to make room for it, which meant getting rid of the crib quickly so we didn't have to juggle a crib and a twin size bed in a tiny room. 

I also got rid of our Bumbo seat this week too.  Another one of the "typical" baby items that Waverly will be unable to use.  There was no need in keeping it around taking up space.  Another way of letting go.

And then there was the meeting with a lady from an agency about services for Waverly.  She is on a waiting list that is at least 10 years long.  And the lady was talking about transitions that come when a child turns 18.  When I found my voice, I conveyed to her with tears in my eyes that it'd be a miracle to have to address that transition time. 

I don't like to cry in front of other people, especially strangers.

And then there was coffee with friends.  Such a good time to get away and have a breather and enjoy time with friends.  We were talking about how to love and encourage each other and others, and the topic of when Waverly was born came up and how so many people loved on us so well.  But something she said has stuck with me.

"When Waverly was born, we were all just in shock."

Wow.  I knew it was hard for close friends and those who knew us.  But to hear it straight from someone, and when I wasn't expecting it, was hard.  She wasn't in any way being insensitive in what she was saying, but it just hit me coming straight from someone on that side of things.  Because I can imagine how it'd be. 

(As a side note, these two friends that I was with have been some of the most supportive, loving gals these past months especially in coming along side of me and offering love, encouragement, support, and practical help.  Thanks ladies!)

And then there's the time with the physical therapist, going over wheelchair options, bath chairs, and other various adaptive stuff that we are going to need in the coming months.  Up to now, we've pretty much been able to use the normal baby stuff for her, but as she's growing, and growing out of those things, we have to start looking at things for kids with special needs.  It's both bittersweet, as it means she is growing and getting older, but also isn't going to be able to do things that other babies her age do, like sit on the floor with toys and play, or bounce in an exersaucer, or crawl around and get into things, etc.

Letting go.

But when we let go of things, our hands are open to receive more blessings.  Blessings we wouldn't have received if we were still holding on to those other things.  Yes, I still grieve the things that are gone, or that won't be, but I can also celebrate the new blessings that have come as a result.  Even if it means that there has been pain and sadness in the midst.  Just the fact that we have been given this miraculous blessing to have and to love is more blessing than we ever could deserve.  So even though it has meant we have had much to let go of, we have had much to hold on to.  And that makes my heart full. 

Wednesday, February 8, 2012

9 months old!

Our little lady is a big nine-month-old now!  She had a good check up at the doctor's today, and now weighs 17 lbs 4 oz and is 26 inches long.  She's definitely grown these past few months!  

One big new thing she experienced this month was her first pedicure!  She was able to get in on the action of her big sister getting her nails painted.  Her little toes looked so cute with pink nail polish!  Although she was not a fan of actually getting them painted, and pulled her foot away every time the brush touched her nail! 

 Her other big news of the month is that she got glasses!  She looks so cute in them, although she has a hard time keeping them on her.  They have a strap that goes around the back of her head, but she wiggles her head back and forth, and they are off in a minute.  We are working on getting them rigged so they will stay on better.  Apparently she is far-sighted, so these should help her see closer up. 
 I love her little smirk here!
 This past week in particular she has been a super happy baby!  She wakes up with a huge smile, and continues to grin and coo all day long.  We are absolutely loving it! 
 She also experienced her first (and hopefully last!) UTI this month.  She really only had a couple of days of seeming miserable, and we were quite worried about her since we didn't know what was wrong.  She would have these long crying spells that I thought were seizures (may still have been).  This picture is of her during a crying fit in the middle of the night.  She didn't sleep at all.  Poor baby...  She's since been on antibiotics and has been much better!
 What a chunker!
 This is a dress that Kathryn wore a lot at her age (or maybe a bit older even!). 

 I took this picture the other morning to show her morning cocktail of medicines.  It's quite a lot!  Of course, she has two extra here because of her UTI (an antibiotic and a steroid).  But still!  There's Miralax (in the measuring spoon to be mixed in with her milk), Keppra (for seizures), Vigabatrin (for seizures), Zantac (for reflux), vitamins, probiotics, cod liver oil, and then the antibiotic and steroid.  Whew!  She sure keeps me busy! 
Waverly still sleeps in our room in the bassinet that she has far outgrown by now.  We are in the process of getting a big bed for her (more on that later), but I just wasn't brave enough to move her to her own room yet.  However, after a few nights in a row of her waking up and wanting to party, I think I may have to try her in the bassinet in her room tonight to see if I get some sleep.  I'm nervous though!  She's now wearing some 12 month clothes, and some 9 month clothes, although she's pretty much outgrown all 9 month shirts (her big belly sticks out!).  Her schedule is still random throughout the day with napping, and she definitely likes to be held to go to sleep.  Stinker! 

We have been loving seeing her personality shine this past week or two!  Hopefully I can post a video here soon so you can see how sweet she is in action!

Thursday, February 2, 2012


It turns out that the crying from Tuesday is due to a UTI.  We got her blood work done yesterday (still waiting to hear final results on that), but her urinalysis showed infection.  She started Keflex this evening, as well as the hydrocortisone that the Endocrinologist wanted her to take in times of sickness due to being on the prednisone for so long.  (Read here for more on that if you're not sure what I'm talking about.)  I'm still not sure if the crying was from pain from the UTI, or if the UTI was causing seizures that caused the crying.  We feel like we've seen a few seizures in her the past few days, but not Infantile Spasms.  But again, we aren't sure, so they may not have been.  If so, I believe they are due to the UTI and they should clear up as she's feeling better.  I'm so thankful they haven't been worse, as I know seizures accompany any type of illness or pain in kids with her syndrome. 

So, hopefully this is the answer to why she's been having weird symptoms for her and why she's just been off for a few days, and hopefully we can get this cleared up without any problems.  Thanks for the prayers, as always!

Wednesday, February 1, 2012

Pulmonologist visit

On Monday Waverly had a check up with the pulmonologist.  It was a good visit to just check in with him.  He did note that her breathing was heavy and a bit obstructive, but wasn't too concerned since her O2 sats are ok.  We will continue to check her sats daily (but won't need to keep her hooked up constantly, just do spot checks and whenever we are concerned).  He did order a nasal canula for the oxygen we have at home for if/when she gets a respiratory sickness instead of just having to use the blow-by (which would mean sitting and holding it by her nose--not quite as effective).  He also ordered a suction machine for her for times of congestion.  She has tiny nostrils (random fact!) so this should help.  Before we would just use saline spray for her nose and then the blue bulb syringe to suck out her snot!  Now we can use the suction machine if needed.  I'm sure she'll be happy about that...! 

I hope these more clinical updates are helpful to some.  I know they are probably boring and some of you don't care about all the details, but I write about it so that others going through this same syndrome can have something to go by from our experience, and honestly, it's a good reminder for me of a brief overview of each appointment! 

Crying, not sure why

Yesterday, Waverly started something new and quite sad.  She burst out crying in the afternoon, for no apparent reason.  We assessed her and couldn't find anything outwardly wrong, but she continued to cry harder than we've ever seen her cry and for longer than I've ever seen her cry for about 30 minutes.  She'd cry out and continue for 10-15 seconds, then settle down for 10-15 seconds, then start crying again, over and over.  Poor thing had tears and everything.  After she finally stopped, she was quiet although somewhat mellow.  She did it again yesterday evening, and then two more times in the night.  A couple of times after the episode she was really twitchy and would move her head side to side and smile.  She was really hard to settle overnight.  Needless to say, we hardly slept. 

She hasn't had any more of those episodes today so far, although has just not been herself.  We took her to get checked by the pediatrician and then got blood work done, but don't have results from that yet.  We'll update when or if we find anything out. 

My hunch is that it's something neurological, possibly a new type of seizure.  Or possibly a reaction to the new medication.  Since starting the vigabatrin, she's also seemed to be breathing harder.  Her heartrate was also a little elevated today. 

So we've been carefully watching her and will see what happens.  Please pray for rest tonight.