He is Risen!

Good Friday and Easter are such amazing days!  I can't describe the feeling of knowing our Saviour died for our sins.  Paid the price for us.  And then rose again!  So glorious!! 
I have to admit, I don't do the whole Easter basket thing. I'm not against it, I eat all the candy, the girls go on egg hunts at grandma's.  As a parent I feel the need to separate our real, true deep down, core of our belief and the Easter bunny.  For a week Macy kept calling her dress and "Easter egg dress."  It irritated me to the core!!!  Easter is NOT about EGGS, BUNNIES or CANDY!  Ok, I'm off my soap box. 
Today at church, I sat with my family, and to hear my girls belt out those songs brought tears to me eyes.  We also did a resurrection devotional the last 2 weeks, and they came home and could tell me the story with details and joy.  And I thought, "they are getting it" :)  He has this All under control. (Maybe I need to lighten up sometimes :)

Brooke did have labs done this week.  Her potassium was up (which we figured).  She's back to eating well.  Her platelets however were still at 64.    Hmmmmm, makes no sense.  Even the MD is scratching his head.  They didn't go down, so that's a plus, but we should see them 150+ by now.  So, her MD requested the blood from Holland Hospital and he's going to look at it himself.  Steve and I did our own research and we are trying some high dose vitamins.  Not sure it'll work, but we have 2 weeks to try.  They moved her big lab draw two weeks out.  They wanted to give her body time to repair whatever is going on, before we draw all the immune studies.  She is eating well, acting well and being Brooke.  That's all we can ask for.  Praise God!  He's got this too :)

 

1 Peter 5: 6 Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time.  Cast all your anxiety on him because he care for you.

Let me tell ya, it's easier to cast anxiety when there is less anxiety :)  The last few weeks I've been more content to hold onto my anxiety and have one hand in the jelly bean bag (ok I always have 1 hand in the candy, anxiety or not.  Just making excuses for that :) But I realize how much easier it is to trust in Him when Brooke is smiling and playing.  I told Steve I feel like when she's happy, we can conquer anything.  When she's miserable, I just want her fixed, NOW! Natural reactions, but a good reminder to be consciously aware of next time. 

Platelets were 63.  So that's up a little.  Not normal but the key word is "up."  Her potassium was still low, but with her supplement and she's eating, I think it'll be fine.  We check labs again next week and then the week of Spring Break we have an appt in Grand Rapids. 

Today she asked where we are going?  Yeah she wants to go away!!  We ran some errands and went out to lunch with Great Grandma.  They showed her their Florida pictures.  Overall, she's doing well.  Definitely back at it.  Eating, playing dolls with her sister and fighting with them.  She asked about church Sunday.  Steve and I did the, no comment.  Even after 5 kids, we still think if we don't answer they will forget they asked.  Not the case.  She tells me daily her friends miss her :)  We'll see.  The Lord give us the answer to that, as He always does. 

She's back Jack!!!

 DOG LOGS!!!

In the words of Si Robertson, "I'm back Jack!"  We started out the week a little rough.  As much fun as it is to stay home with Brooke 24/7, life is going on.  She is not contagious, she is just really skinny and weak.  She prefers to lay on the couch.  I had to go to work Monday.  She was going to her friends (and my friends :)  house.  Macy was dressed and waiting by the door, Brooke was, you guessed it, laying on the couch.  I said, "you can lay on the couch at Sarah's, LETS GO!"  I did her tube feeding, dressed her and we were off.  She cried and pitched a COMPLETE FIT!  She clung to me and screamed, Sarah removed her from me and I left.  It's obvious she doesn't feel well, but this is not acceptable.  I texted Sarah and apologized for leaving her my screaming kid, and she said, she's not screaming anymore. The screaming didn't last long.  She wasn't her normal, energetic self, but she did play with the girls and she even ate over there.   She got home and was tired :)
Yesterday she couldn't get enough food, and the smiles kept coming!!!!   I think we are over the hump.  It's so hard, when to cuddle and when to have tough love. 
She did have labs done and her platelets are down again as well as her potassium.  The potassium we just give a supplement.  The platelets we have to check again tomorrow.  If they are still low we will go to clinic for IVIG.  We will also be checking her thyroid tomorrow.  She is so COLD!  Always complaining of being cold, to the point we give her those, "hot hands" Leah uses for skiing to warm up. We'll try to figure out what that's about.  It's probably because she is so skinny.
We'll see what tomorrow brings!  We can handle it as long as there is a smile on that little girls face.
SOOOOOOO thankful for great friends!

The Week

Miss Brooke has been sick again.  We can't seem to get this kid on top of things. This stomach bug has gotten the best of her.   She spent a couple days literally on the couch.  She didn't move, barely spoke.  Thursday we started tube feeding her.  Friday we took her to the MD just to make sure we were ok through the weekend.  Because she hadn't finished her antibiotics for her ear infection, the best option to treat this was an antibiotic shot.   BLAH!  I don't like those things.  I've seen adults cry because they hurt so bad.  But it was the best option at the time.  An very kind nurse that I know personally gave Brooke that shot.  After the shot Brooke proceeded to yell at the lady, in a very mean loud tone, "I HATE YOU!"  Oh boy!  I didn't know what to say.  I apologized, obviously, BUT, I understood how Brooke was feeling.  She was quite irrational at that time.  So the next day I told her we can't say those things and she needs to apologize.  Her response, "I'm still mad."  Obviously she wasn't too lethargic.
So, where are we now?  We are still home with Brooke.  Recovery is S L O W!! She has lost more weight yet and is still refusing to eat.  So we are back to tube feeding her.  She is NOT happy about this, but when we tell her, it's tube feeding or hospital, she lets us do it.  She may gladly eat if she wants but she told Steve tonight, she's afraid to eat. So we are back to the head games. 
Tomorrow she goes to a friends house while I work. Steve and I want to see how she acts out of her element. She's been home for a while now and her energy is less than optimal.
Everything with Brooke seems to be a waiting game. She never bounces back like her sisters. We wait and pray. Her sisters are starting to ask how much longer Brooke will be sick. Macy even asked today if Brooke was going back to the hospital. These girls are very observant.
We have again been reminded this week how blessed we are with amazing kids and family. We couldn't have made it without Grandma Koeman's patience and love. She would sit with Brooke and talk with her and read her books. Brooke hasn't been all that fond of Steve and I at times, so those quiet times were love :)
It's a new week. We will proceed knowing God is walking us through.

                                    Macy at Fun Night playing Plinko.  WHOOO HOOOO for Plinko!

A new woman!!!

Today was the day.  First Leah got to shadow a dentist for job shadow day.   She had a great time and learned a different trade.  From there we headed to get the braces removed.  Seems crazy it's been 2 years already. 

 TADA!!!  So pretty!  I texted a picture to her grandma's they both said, "beautiful!"   I soooooo agree, she is beautiful!

 What do you do after you get your braces off? I didn't know because I never had braces, (ask Leah, I would ask her so many questions about her braces she would stop answering me :)  I told her she should probably eat things she wasn't suppose to eat with braces, (see how I worded that, wasn't "suppose" to eat it.  Means she probably ate it anyhow).  So we stopped for some candy. 

Next week she gets her retainer and she's good to go.  Blows my mind.  1 down, a few more to go.  I want time to slow down.  Stop growing up so fast!!!!!!

 

Brooke update.......her numbers Monday we 80.  That's great!  Unfortunately she started Tuesday with some belly issues, today she has a fever, nausea, diarrhea, and tries to vomit.  She went along to have Leah's braces off, otherwise she has laid on the couch and said, "please don't make me go anywhere."  That is so not Brookie.  I emailed the MD and explained what was going on.  I am sure this is a virus, but my comment to them was "really?"  She just got over something and here we go again.  It just doesn't seem fair.  Poor baby!  We pray for a quick recovery and tomorrow to be better.

It's going.............

We have transitioned into being home.  You wouldn't think that would be a hard transition after only 2 nights, but life goes on.  Steve kept everything afloat but that doesn't stop the kids from getting dishes and clothes dirty.  Parenting is definitely a 2 person endeavor. 
Brooke did well on Thursday, our sitter emailed me in the morning stating how good she was doing.  Steve can home for lunch and said she was doing great.  By afternoon she was tired (to be expected) but acted well. 
Night time she woke up at 10:15p and screamed til after 11:30p. She was hitting her head and complaining her feet hurt (foot pain not new)  I texted Steve at cards and said I'd give her a few more minutes before I was waving the white flag.  After some pain meds and more pain meds, she calmed down.   In the morning we started the process all over again with the headache and eye sensitivity.  These are side effects of the IVIG she received.  So her MD gave her 2 more doses of steroids to calm that. However she still complained her ear "didn't feel right."  I asked if it hurt, she said/screamed, "no it doesn't feel right."  She also still has a nasty cough.  So off to her MD and she was diagnosed with bilateral ear infection and a little noise in her lungs.  On Monday she had a chest xray what was not normal but we figured it was viral pneumonia (still could be, who knows).   Anyway, he started her on antibiotics for her ears. 
She slept good last night.  With antibiotics, steroids and Tylenol the odds of sleeping were on our side :)  I'd say her color is a little better.  We are hoping that yesterday was just a bad day.  She gets blood drawn on Monday.  Until then we just pray the meds heal her little body. 

Devotions today:
Philippians 4:8 Fix your eyes on what is true and honorable and right.

We fix our eyes on Jesus and His peace, that He has this all under control.  He knows Brooke's needs and holds her in His hands.    He's got this!!!

We're Home!

Numbers were in this morning.  Platelets were 34 which means we were headed home!!!  Monday we were at 4, Tuesday at 6 and today at 34.   Normal range is 150 to 450, so obviously we are still a little low.  The plan is that with the treatment she received the numbers will keep going up.  We check blood work again on Monday.  We have to watch her this weekend for any signs and symptoms of bleeding, if we see any we just call them.  She also has been informed no jumping, ramming, bumping or rough housing.  Anything that increases her risk of injury, bruising or bleeding she needs to not do.   Not sure how that's going to work but we'll try.  She is happy to be home, but it's obvious at times, she doesn't feel well.  She gets very irrational and there is NOTHING you can do right for her.  So we walk away.  Eventually she comes around. 

Brooke packed up and walked right out of that hospital.  They asked if she wanted a wheelchair, she said, "no, that's how I got here."  Hehe, she remembered riding in the wheelchair to her room :)

This is how we all feel right now.  Us old parents are just as tired as the 4 year old. Keeping these kids going is not for the weak.  But the older I get, the weaker I feel, hehe. 

We'll see how the weekend goes.  Fall back into routine.  Praise God for a short visit and that she has responded to the treatment.  To us her color still looks off, but we'll just have to wait and see.  I'd rather stare at her at home than in the hospital :)

Idiopathic thrombocytopenic purpura (ITP)

Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood.

That appears to be what we are looking at with Brooke.  It commonly comes after a virus (which Brooke has had) and is treated  with IVIG (which Brooke always got in the past to boost her immune system).  Last week Steve and I noticed more bruises on her legs.  But she's 4 years old with a bunch of sisters.  I will be honest and say, they beat each other up quite often.  On Thursday she bumped her back, slightly, and I watched it turn black before my eyes.  I told Steve then, I was worried.  Steve was gone for a couple days with work, and when he got home, he said, "Somethings not right."  Her color was off.  Over the weekend we noticed a red petchial rash.  I then knew we had issues.  But being the weekend, and she was acting like normal Brookie, we waited til Monday to avoid an ER visit.  Hence, here we are. 

 1 dose of IVIG was given last night.  It actually got done at 4am.  Labs were drawn at 7am and platelets were still low.  Because I don't have the sheet with lab values in front of me, I won't bore you with numbers.  The medicine didn't have much time to work before we checked labs again.  Today they did another round of IVIG and steroids.  We'll see what tomorrow brings. 

They do not feel this is related to Brooke's SCIDS.  It actually takes a functioning immune system to get this illness.  Go Brookie!  Way to show them you are "normal."  But until her numbers are normal and this never comes back again, we won't hold our breath as to what or why this happened. 

She is doing well.  This afternoon Miss Dawn brought up her cohort in crime.  The nurses were amazed in the change in Brooke, her demeanor and energy.  Her color was still off, but she got up, had to get dressed and was trucking around the room after Macy.  Macy gives her drive and purpose.  Macy was so happy to be here, she said, "all I have to do at home is play with Jack (the dog).  It's BORING!"  Gotta love these ladies.  After school Steve brought up all the girls, we had a pizza party and hung out. 

The plan is I stay tonight and if the numbers are right, we head home in the morning.  If the numbers are not right, Steve heads up tomorrow night and we start the "switch" again.  We know the process.  It's just different now that Brooke and Macy know whats doing on.  God is in control.  As I have been reminded, "God's got this!"  And I believe that with my whole being. 
Thank you for the prayers, texts and calls.  We cherish them all!!!  I wish I could call everyone back but it seems crazy I stay busy up here. Between the doctors, nurses, PA's, and the 4 year old patient there isn't much uninterrupted time.  We are grateful for each and everyone of you.  Please don't ever hesitate to text, call or email. 

Oh Brookie!!!

We didn't make it through our transplant celebration today. Long story, Brooke has had a virus about 2 weeks. Her platelets have gone very low which bought us a night or 2 at the "spa." IV is started, blood drawn, and awaiting IVIG to boost her immune system. I would write more but typing on my tablet is less than fun :)
We have no doubts God is holding her close. Happy Transplant Day baby!! At least she got to eat her donut :)

Happy Birthday?

4 years ago March 4, tomorrow,  we were told, "this is Brooke's new Birthday?"  We were like,  "just fix her."  I'm not sure what to call it.  This is the day, 4 years ago, the doctors took a bag/vial of life out of one daughter and placed it into another daughter.  It was a day we sat and watched and said, "is this really going to work?"  The doctors said, "we just have to wait and see." 
That process has given us 4 amazing years.  We sat around the table and talked about that day.  Megan and Leah remember it well.  Steve and I remember like it was yesterday.  Brooke piped in and said, "I am NEVER doing that again!"  We asked if she remembered it, she said, "NO, but I don't want to do that again."  We pray she is right. 
This is a day that makes me want to eat cake and celebrate.  To have had these past 4 years has been the ultimate gift.  Steve and I can both say it has changed our lives.  Changed our outlook on life, changed our parenting, changed how we deal with crisis, changed what we classify as a crisis. 
I would lie if I didn't say doubt creeps in from time to time.  We were never promised a cure or a 100% fix.  So we may over analyze things and be protective.  But we pray daily that the Lord guides us through this day and leads us to the next step.  He has not let us down, and has proven that living for this day is what's best.  We don't look to the future because we are certain He will carry us through today and tomorrow.  What a blessing!! 

Thank you Jesus for the amazing 5 gifts you have given us, along with the gift of each other.  HAPPY TRANSPLANT DAY KOEMAN GIRLS!!!