Friday, September 28, 2012

Riding Waves

Have you ever had one of those days where Satan just seems to be attacking you in every single facet of your life?  Today was one of those days for me.  No matter what I did, it seemed as though I could not get away from him.  It seemed as though he was there ready to pounce on me around every turn and bend.  I was letting him win, I did not stand firm on the promises that God has given to me.  I just learned this and discussed this this week in our Bible study.  Ugh, and he did get control.

I had lofty plans of getting some house work done and a lot of snuggle time with Lydibug since the other girls were both at school.  I had to pick up something at the doctor's office, and since I was there I should get her weight checked, right?  WRONG!  She had lost a fair amount of weight since she was last seen (just a couple of weeks ago).  She really has been losing weight since June.  She was over 18 pounds and she is around 16.4 now.  Not a huge loss, but she is eating WAY more calories than she was before.  I realize she is moving more, but she has not had a period of good gain.

Every time this is brought up to our GI doctor, they say put her back on the tube.  They tell us to up her calories.  However, we feel that everything else needs to be looked at.  Putting her back on the tube is not in her best interest for long term.  She is eating and she is loving it.  So we believe keeping those orals skills is essential.  However, why is she getting all of these calories and still losing weight?  The nurse today thought maybe absorption issues.

So after much debate in the office with the nurses, I decided just to go home and wait for a call from our doctor before I contact any of her other specialists.  However, I bearly made it to my car before I just broke down.  Could it really be possible that we are standing here again?  Can she just get a break?  Can I just get a rest?  I called Eric and just talked to him.  I am so thankful to the Lord for him. 

I just could not shake this.  I called my friend and we talked.  She has been such an inspiration to me, she is battling her own fight.  She understands the doctors and the frustration.  She understands the loneliness.  She understands how draining it can be to continuously battle.  But she understands the importance of all of that.  It was a great talk.

I also found out that a friend of ours from the Ronald McDonald's House had lost her son today.  His battle with cancer had ended.  How sad that is.  I just could not imagine.  I have my daughter still to hold and hug and interact with.  She does not.  I need to be thankful, even when we are walking in that valley.  Even when I don't understand.  Even when I don't agree with God's plans.  I need to be thankful and I need to embrace the moments that we do have.

My friend surprised me with lunch today.  We had a great afternoon.  Just before she arrived at my house, the doctor had called and said they would like to do the full blood work up.  They would like to look for Celiac's Disease, Thyroid, Leukemia, make sure the heart function is good, a complete lites work up to make sure that those are all in balance.  They want to make sure that they are not missing anything.

FINALLY a doctor is hearing us.  We were just asking the wrong doctor.  I really thought that this was more of our GI doctors responsibility.  However, all he wants to do is her to use the tube.  I want to tell him..."Get it through your head buddy, we will use the tube if we HAVE to, but as long as she has oral skills, it is in her best interest to use those.  Why don't we look at why else she might not be gaining weight and not take the easy road."  Ugh.  I am so thankful for our doctor.  He rocks and so does his staff.  He listens and he cares.  He wants to make sure he looks at Lydia for Lydia.  That is so important.  She is not a diagnosis and she WILL NOT follow what the text book says or even another patient for that matter.  Look at Lydia, listen to her mom who NEVER leaves her side.  I promise I will play nicely on a team with you!

So we went in for the blood work.  I have a list of names who can draw her blood and who cannot.  I found another name as to who cannot draw her blood.  Really, please don't show ego to me!  But my rule is three pokes and you are done.  The first one was success, but due to all of the labs they needed a lot of blood.  The vein ended up rolling before they could get all of the blood needed.  Then another lady tried and she just was fishing for a vein.  Don't you realize how painful that is.  Ugh...I really think she just wanted to poke my daughter to get her to scream since she did not make a peep the first time she was poked.  They called in our favorite lady.  She was less than pleased with what had gone on...but quickly she got the blood and we were on our way.

They told us the results for most of the tests should be back today.  They will only call if one of the labs comes back abnormally.  I am assuming all of the labs are just fine since I did not hear anything.  Well, that is what I am telling myself at least!  I am thankful for the past 14 months, I have become a lot more patient and I have learned that expecting the worse in these cases is not a good thing.  So while I prepare myself, I can anxiously wait!

She looks so good to me.  She is tiny, but she has rolls in her knees and her hands.  She did have a great length that is good!  I just want to make sure that we are on the right track.

Exhausted, yes.  Some days are better than others.  Some days you just feel like really?  But, every day is worth it, no matter what.  It is another day to live for God, another day to enjoy all of His blessings.  The highs are high and the lows are low.  At any time it can change.  I have never experienced anything like it.  I think because there is so much associated with everything that happens.  With Lydia it is not just her being sick, it is who should we call, have we included all of the specialties that should be included, where should we go, can Fond du Lac handle her or should we just go to Children's?  There are so many questions.  Often times I just feel so alone.  I just don't know who to call or what to do.  We are pushing harder to have our pediatrician primarily care for her.  It is easier for us and he does a great job.  But until thing, we will have to keep fighting through.

Good thing her smile can always melt my heart.  She just has a way about her.  Even in the roughest of storms, when I can see her smile, things will be just fine.  After all, she is the enduring the pain and the tests and the surgeries and she always comes out smiling.  So inspiring to me!  I am the blessed one. 

No comments:

Post a Comment