Friday, May 28, 2010

News and more

Well we finally saw the endocrinologist on Wednesday for Leah's "underlying condition".  For me, it was such a relief to finally be able to talk to a specialist about our sweet girl.  It took 2 weeks for us to be able to get in to see Dr. "S" and leading up to this time was hard on me.  Although Leah felt good and acted pretty much normal, I was losing sleep.  I mean, really, I am not a totally stressed out, over protective mother, but every night I would lay down to sleep only be able to think about going to see this specialist.  This was an appointment that just couldn't get here quick enough.

Dr. S was very good!  She talked very quickly and spoke with a lot of medical words, so it was really hard for me to follow her.  But, the gist of it is that she does believe that there is an underlying condition, and she thinks she knows what it is.  She believes it's a metabolic disorder and although I don't really fully understand the ramifications if she does have this, it seems to me to be something that we would just need to be aware of.  I don't think there is any medication she would take, but we would need to know that Leah can not skip a meal, and if she gets sick, we need to be extra vigilant about giving her lots of food and sugar so she does not end up close to unresponsive again.  I can handle that!  I just need to know what I am facing, and we can handle it.  The hard part about this, is that to actually test for this metabolic disorder, we would need a "critical sample" of her blood, a sample when she is critically ill again.  So, the question becomes, do we wait for it to happen again and see if we can get that sample upon arrival to the hospital, or do we "force" it to happen by admitting Leah to the hospital, put her in a controlled situation where we would fast her for 24 hours to make her sugar go low again and then draw the blood.  On Wednesday, Dr. S ordered some more blood tests and urine sample.  Those results won't be in for a couple weeks (they don't move too fast, do they?!) and once we have those results, we will decide which road to take for this critical sample.  So we continue to wait, but we are on a road.  And, we are learning to trust in the Lord and rely on His peace during this time.  I am amazed at the things that I am able to learn about my Sovereign Lord while in times like this.  I will post about that another time!

But in between doctor visits and worrying about Miss Leah, we have been quite busy!  The end of every school year is so busy and this year has proven to be just as busy!  I will post some of what we've been up to with some pictures this weekend!

Friday, May 14, 2010

Eye-opener

Do you ever have a moment where you notice your current reality and it hits you how bad (or good, depending on your situation) things were before?  Well, I have had a few of those times this week.  The first time was on Tuesday.  I had to take Leah back in to Children's to get some blood work done.  We went back into the room, sat in the chair with Leah on my lap, and the tech proceeded to put on the tight blue tourniquet around her little arm and insert a needle into a vein.  This was a familiar sight to me, since this was the same arm (almost the exact same place) as the IV that was set up only 2 weeks earlier when Leah was hospitalized.  I expected her to take this well, since I have been pricking her toe at least 3 times a day to test her blood and she holds up her foot for me when she sees it coming.  She doesn't even cry!  Well, the reaction from Leah with this IV was NOT the same as 2 weeks ago.  The girl screamed!  She arched her back, she fought me and the tech, she tried to pull it out.  She continued to cry for a good 5 minutes after he was done!  For me, this was an eye-opener to how sick she really was just 2 short weeks ago.  When Leah had her IV set up in the ER, she didn't even need to be restrained.  She just laid there on the table, at one point she opened her eyes and let out a small grunt before she realized it wasn't worth the energy and she went back to sleep.  I was thrilled to see her fighting this time, but it re-inforced the fear of how bad she had been.

Another eye-opener for me came on Wednesday afternoon when Leah really started to turn a corner for the good!  She started playing, smiling, "talking" and at one point I even had to pull her hands out of the toilet water!  It was pure joy for me!  I actually called Brian at work and said "Listen to this!" and held the phone out for him to hear Leah being her sweet little self....and shed a few tears over it.  Again, I was thrilled to see her behaving like this, but it was quite an eye-opener to how poorly she had been feeling.

Each day, Leah has been more and more like the sweet little baby girl I know.  She even has some new tricks!  She can point to her nose, her hair, her eyes, and if you ask her where her lips are, she takes her fingers and blows raspberries with them!  She is walking without stumbling and playing and getting into everything like I expect a "normal" 14 month old to do.



But, "normal" still doesn't seem to fit in our vocabulary when describing Leah.  The blood work from Tuesday came back normal.  We are thrilled, but as the pediatrician said, the more we test and get normal results, the more "obscure" the answer is going to be.  She, and every other doctor who has looked at Leah's case, has said that there is an underlying condition.  Hypoglycemia just does not occur in babies for no reason.  So for a reason, we wait.  There are still a couple of tests out there that we are waiting on the results for , and in 2 weeks we will go see an endocrinologist to see if she can shed some light on this.  In the meantime, we watch Leah closely and we have a plan if she gets sick again.  So for now, we wait.  And we live.

Monday, May 10, 2010

Leah's Update

Well, after Leah vomited yet again on Saturday night, I spent my Mother's Day in worry for my sweet baby.

I took Leah to the doctor today, and I told the pediatrician that I wasn't going to leave her office until we had a plan of action to figure out what was going on.  I'm sure she loved that!  I do love our doctor, she is wonderful!  I explained all of Leah's symptoms, the low blood sugar and the unexplained random vomiting accompanied with tiredness and lethargy and a bit of clumsiness (except I used a few more words than that!).  Dr. M definitely agreed that there is indeed a problem with Leah, but isn't quite sure what it is.  One of the scariest moments of my life was when she said we should go down to Children's to get a head CT to rule out a brain tumor (something that I had already suspected in my uneducated assessment but would not admit out loud).  She said it was a "reasonable enough possibility that we couldn't not take a look".  So I made the treck down to Children's, waited an hour for the scan, stood there right next to my precious baby while she watched the light show and I furiously prayed, and drove home through rush hour traffic to await the phone call.  All of the sudden, the worries of yesterday were no longer important and my heart and my mind were consumed with my little 21 pound girl.  It was consumed with the "what if's", but it was also consumed with the love of Jesus.  The Lord's arms were gently around me all the way, giving me a peace that only He can give.  After all, He loves little Leah more than I do.  A hard thing to fathom!

The call finally came at 7:34 pm from Dr. M with the good news that the scan was perfectly and beautifully normal!  Praise God!

However, this still leaves us at square one.  Why is Leah's blood sugar all over the place, especially low, and why is she vomiting at random times for the last 2+ weeks?  Why is she lethargic and "just not herself"?  Will we have another episode of her not waking that will send us right back to the ER?  Dr. M told me she is perplexed.  So, we are back to looking for a metabolic disorder of some sort.  Tonight, she will research and tomorrow she will call me to take Leah back to Children's so they can draw some blood for an array of tests.  I am looking forward to an answer.

God is so good, and I know His plan is a good one!

Saturday, May 8, 2010

Learning Patience

I have always considered myself a patient person.  In fact, when in second grade, my teacher Mrs. Ross once told me how patient she thought I was.  I didn't think much of it at the time, I was, after all, only in second grade.  But, I am no longer in second grade and over the last 20 some years since Mrs. Ross made that comment to me, I have noticed that I am a relatively patient person.  Until now.  Right now, and for about the last 10 days, I have felt very impatient.  I wasn't going to blog about this, because, well, I don't really know why not.  I have posted about this on facebook, I have talked with many about it, and have even shed a few tears of frustration...and a few tears of fear...about it.  I have researched it, watched closely over it, and have spent much time in prayer over it.  Since I don't keep a journal anymore (four kids and a photography business have kept me from it), it's time for me to just write about and it...and this seems to be the place.

It has consumed me.

It is Leah's health.

Wednesday April 28th started like every other typical day.  I got the girls ready for school like normal.  I heard Leah cry through her monitor, and since I was about to watch the girls get on the bus, I left her there.  I went into her room about 10 minutes later and could tell right away that she wasn't feeling well.  Over 24 hours before this she had thrown up twice and had diarrhea once but Tuesday she had been absolutely fine.  I picked her up and kissed her sweet little forehead like every other Mother who thinks something isn't right. It's that Mother's Thermometer.  However, this time, there was no fever.  I thought it was strange that she didn't have a fever because she looked so pathetic.  As I carried her down stairs, I knew that something just wasn't right with her.  She was very limp, she couldn't even hold her head up on her own.  Leah's sweet blue eyes were glassed over and they kept rolling back into her head as she would drift off to sleep.  This girl has not slept in my arms since she was an infant, and this morning, she couldn't stay awake.  My heart was heavy as I knew that something just wasn't right with my sweet baby.  I ended up taking her to the doctors office (because that's what the nurse said I should do, against my gut feeling that I should just take her to Children's...won't do that again!) where her doctor took one look at her and told me to go straight to Children's.  She did listen to her heart and lungs to make sure she didn't need an ambulance, and decided I could drive her.  She was still asleep and listless.

We arrived at the Children's around 10:00 and the hustle and bustle began.  We had almost immediate and wonderful treatment for our Sleeping Beauty.  It was so scary to see my Leah not wake up.  The nurses did 2 urine caths and set up an IV and the most Leah did was open her eyes and grunt.  The ER doctor was very concerned that Leah would not fight her...she was just so tired.  Blood was drawn and it was determined that her blood sugar levels were very low.  She had a reading of 40, normal is 80-120.  They gave her a bolus of glucose, a slow drip bag of glucose, and then 2 separate bags of sugar water.  Her levels rose nicely, but she was still very sleepy and listless and we were admitted.  Around 4:15 she woke up, drank some juice, and then screamed inconsolably for about 45 minutes.  It wore her out so much that she went back to sleep for about another 2 hours!  She sure does look sweet, though, doesn't she?!


She was awake and happy for about 3 hours that evening, walking the halls and working her charm on all the nurses!  We spent the night, Leah in her comfy crib, and I on the very uncomfy pull out couch!

Thursday morning we were discharged, but with no real answers as to what happened.  This is where my impatience rears it's ugly head.  While we were in the ER and after being admitted, the docs just kept talking about Leah being a medical mystery.  They just couldn't figure out what happened to cause her blood sugar to drop so low, something that should not happen without a reason.  There are a few "ideas" out there right now.  One is that she may have Celiac's Disease, a condition where she basically can not have gluten.  We are waiting on a blood test right now.  The other is that it may be a metabolic disorder, but we can't test for that until she has another "epidsode" so they can draw blood for an accurate test.  So, we wait.

In the meantime, on Thursday evening Leah started throwing up again.  She threw up three times before she went to bed.  Friday morning I saw a friend of mine at preschool who's daughter has diabetes.  She tested Leah's sugar for me and it was down to 60 again.  Boo!  She let me borrow a meter so I could test her throughout the day, and I called the pediatrician again.  She spoke with a metabolic specialist who said that at this time it would not be accurate unless she was acting really sick again like last week.  Her sugar went as low as 43 yesterday and when she woke up from her nap, it was back up to 92!  That silly little girl!  Now, today, she has diarrhea and won't eat much and her sugar is all over the place, mostly low.

Can I just tell you how frustrated I am that I can't do anything about this!?  Can I tell you how frustrated I am that no one can tell me what is wrong with her?  Can I tell you how frustrated I am that I can't prevent this from happening again?  And can I tell you how much I love that little girl and it's scaring me to know that something just isn't quite right with her?  This is the area where God is teaching me patience.  He is reminding me that Leah is His child first.  He knows what is best for her and He knows every detail about her, down to the number of hairs on her head.  He is a good God and His plan is for her and our family is good.

So this is a journey that wasn't in our plans, but we are going where God wants us to go.  Where He leads, I will follow.  And I have a feeling I will be learning patience all the way.