In My Arms

I was listening to the song by Plumb, In My Arms, on the radio today.  If you have heard the song, she is singing, I assume, about her child.  How she will hold her child and keep it safe even through the worst storms of life.  I have always thought this was a pretty song, but today I realized how untrue it is.  As much as we want to, we can't wrap our children up and keep them safe from all of life's storms.  I saw this very clearly over the past 2 weeks.

Even though I know that I can never protect my children completely from harm, I have peace knowing that God has them in His arms.  I may not always choose the path he has chosen for them, but trust that he will get us through it.  This is not easy.  We tend to think we know what is best.

Watching and listening to Brooke, I am reminded how strong he makes us.  The other morning I asked her if she wanted to put on a hat.  She said, "Why mommy, do you want me to wear it?"  Part of me wanted to tell her yes because people might stare at her head and make her sad.  But I said, "No, only if you want to."  It does not bother her if people look.  One lady told Brooke, "Oh I just feel so sorry for you."  Brooke looked at her so strangely, as if to say, "Why?"

Brooke overheard e telling someone about her future surgery.  She asked me later if she needed another surgery.  I told her yes.  I thought she might run away screaming.  Instead, she looked at me and said, "ok."  What???  You are ok with this?  I am so thankful for the strength God has given her!

Home!!!

We got home around 12:30!  Thanks to my awesome friends who brought dinner, brought milk and eggs, and many other staples!  Spent time with kids and did some cleaning!!!  So glad to be here!

That's all for tonight!

On Our Way

Gonna keep this short and sweet.  I am super tired.  But we made it 1/2 way across PA.  The kids were very tired so we stopped for night.  Will be home tomorrow.  Brooke had all her staples and stitches taken out this morning.  She still has drainage, but doc said it was ok.  She sat pefectly still why he removed all the stitches and staples!  She did not even say ow.  So Brave!!! 

So many cool stories I want to share...but they will have to wait.  Just to tired!  Good Night all!

Home Sweet Home

Ok so I keep telling everyone that we are leaving NY tomorrow.  Truth be told the doc has not told us this is ok yet.  But I really feel that it is time to go home.  So I am gonna put my faith in this.  Brooke is doing really well.  In fact, in the morning you would think she never even had surgery.  By late afternoon and evening, she is wiped out.  She looks good, although she has lost some weight.  Her head still has fluid, but I am confident they can drain this and remove staples.  Her UTI is getting better.  With all this good, home has to be at the end of the road. 

I am so thankful for the quick recovery that she has had.  I am so thankful for all the prayers that have carried us through this first journey we are on with her.  When I think that this is just a bump in our road, I grow slightly weary.  But I know that we are on the right road. 

In case you do not know about some of things people are doing for Brooke, please check out the ways to help page.  We have some awesome people planning events for Brooke.  We have been blessed to have help with so much.  But the medical costs and the cost of living away from home are overwhelming.  I hate talking about money.  I hate even more asking for prayer about money.  I am so fortunate to have a roof of any kind over my head, and a family that loves each other under it.  That should be enough.  Unfortunately, the bills have to be paid, and baked goods do not work as payment.  I have tried. :) 

I pray my next post is in OHIO!!!!!

Passing the Time

My mom and I were driving to the grocery today, and she said "Oh good it is already 3PM."  I laughed because we are actually wanting the days to pass quickly, as opposed to at home when we want more hours in the day.  But time really does pass quickly no matter where you are.  I am trying hard to enjoy every moment here.  Watching Brooke and Chandler form a special little bond.  Her calling "Mr Chandler" and him just laughing at her.  Seeing Chandler learn to sit up and watch what is going on around him.  Brooke putting together a 50 piece princess puzzle with very little help.  Doing a million loads of laundry because chndler peed on me, then the next outfit he pooped on me, then he pooped all over himself, and my mom and I just laughing at it all.

So even though the time is passing slower than normal and we are missing the ones we love in Ohio, trying to find Joy in each moment. 

Brooke is doing good.  She is on 2 antiobiotics now.  The swelling in her head is still there.  Afternoons and evening are the hardest because she is tired and cranky.  Just to clarify she is out of the hospital.  We are all staying at the Ronald McDonald House of Long Island.  Hoping Monday is the day for staples to come out.  If not I may kidnap doctor and medical staff and bring that back to Ohio with us.  Just Kidding.  But I am saying we will be leaving, even if I have to turn around in 2 days and come back.  Really want to see Tim and Aidan. 

Thanks again for prayers and amazing friendships.

Update

Must be tired, could not think of a fun title.  We went back to doctor this morning because there was more fluid around incision.  It may have to be drained again on Monday, but he wants her on the antiobiotic for awhile.  But tonight she started running a temp of 101.  So I had to call him.  Plus Brooke now has some UTI symptoms.  I am waiting for his call back. 

I thank you all for continued prayers.  I have yet another pray request.  Found out today my husbands grandma is in the hospital back in Ohio.  Her kidneys shut down once and may do so again.  She is very ill.  The kids are very close to her, and I am guardian for her daughter.  I can't be there for Granny or to explain to Amy, her daughter.  I am just praying that she will be ok.  I know I ask for many prayers, but I know I have some awesome people out there with an inline. :)  Thanks to all!!!

Short Post!  Gonna wait for the docs call!

Tears

I have to admit I am writing this with tears in my eyes.  We can't come home yet.  :(  My heart aches.  Ok here is my little pity party for myself...I am tired, I miss my husband and my Aidan.  Yes dare I say it...I miss Ohio.  Ok I am done feeling sorry for myself.

We were able to see Dr.B this afternoon.  He amazingly got Brooke to sit perfectly still while inserting a large needle into her head and pulling out the pocket of blood.  She did not even cry and was on no pain meds.  I am telling you, she loves this doctor!   But as he was wrapping her head, I said, "You are not taking out the staples."  And he said, "Oh no not today."  Ugh!  He wants them to stay in until Monday.  He put Brooke on an antibiotic to ward off infection.  So with that news, we must stay in NY.  I am thankful that he is such a good doctor and can be honest with me.  And I feel blessed that we can stay at the RM House, and that I have my mom here to support me. 

Please if you can, a few prayer requests.  1. For Aidan.  He is homesick and he broke down on the phone talking to me tonight.  It just breaks my heart and I want to hold him!  I know he is in wonderful and capable hands, just missing him!  2.  For Tim.  He is missing us and us him!  3. My work.  I am feeling like I am not being efficent enough.  And I am not there to do what I need to do.  Just hate letting people down.  4. For my mom, dad, sis, and bro.  My mom has been gone as long as me.  I know they are missing her a home too.  4. And of Course Brooke!  That she keeps healing and that Monday will be a good day all around!  Of course still praying for His will not ours.

Love to all!

Stitches and Staples

I am constantly reminded that nothing goes as planned and nothing is as it seems.  This is not always a bad thing.  It tests our faith and courage, and keeps us on our toes.  I always say life is an adventure.  And all adventures have good moments and not so good moments.  What does all this mean to us...well let me share.

Today we headed back to TCI (The Chiari Institute) to have Brooke's staples and stitches removed.  The nurse takes us back and tells Brooke she can have a surprise if she lets her pull off the tape and bandage securely sealed to Brooke's head and hair.  Brooke knows this means a big ouchie and immediately starts screaming.  This sends poor Chandler into a panic, because he now cries everytime his sissy cries.  (and it is a deep sobbing cry, not his normal one. :( )  So my mom quickly takes him out of the room.  The nurse, seeing that we will need help calls two more nurses into the room.  They try to entice Brooke with bubbles.  I knew they meant well but I told them, "I think we need to just hold her down."  So myself and 2 other nurses hold her down, while the other one pulls off the bandage. 

Now the staples.  The lay out the tools and the one nurse swabs with iodine, while we are still holding Brooke down, who is still kicking and screaming from fear.  My nurturing mom steps in and thinks, "Pick up your daughter, cuddle her, kiss her, tell her it is all going to be ok."  But then my Reality Check mom jumps in and says, "Kisses later, help the nurses hold her down, don't cry, and don't faint! There is just no time for any of this!"  So out comes the 1st staple.  Can I just say, it is clear to me more than ever that God did not call me to be a nurse.  After the staple came out I knew something was wrong, because the nurse just stopped.  They told me I could hold Brooke because there was a fluid leak.

So there we sat waiting for the neurologist to come in and look at the incision.  When he came in, he informed us that there was swelling around the Bovine Patch.  He did not feel it was a CSF Leak (Cerebrial Spinal Fluid).  But he did feel that Dr. B needed to look at it.  He also did not want anymore staples to come out.  Dr. B was in surgery, so they would call us later with more details.  They wrapped her head tightly with an ace bandage. 

I decided I needed a cold Dr.Pepper with Ice.  We went on a search for one, but New Yorkers appartently do not like DP???  Even Taco Bell did not have it!  And if you know me, this was a great disappointment and discouragement.  And for lack of a better plan...we went shopping.  Malls in NY are just plain insane but fun! 

We found out this evening that we will see Dr. B tomorrow around 4PM.  He will see us at the hospital.  He will probably need to drain the fluid.  This is done by inserting a needle into the pouch of fluid and draining.  My poor baby is going to be so traumitized.  Then if he feels the incision is healed enough, he will remove the staples.  If not, he will rewrap and we will have to wait a few more days.  We talked about going home and having the staples come out there, but what if something happens there?  I would rather be close to TCI just in case. 

I have to admit I was having a real hard time finding the silver lining.  But God always comes through.  Tonight we met a family who's 9 year old daughter has Chiari.  She has not had surgery yet.  She also has the instability in her head.  So there it is...a great reason for being here tomorrow.  A chance to learn more about this family, and allow Brooke to make friendships with other Chiarians. 

Love and Hugs from us all!

Waiting...

Just hangin out here in NY.  Trying to keep a 5 month old and a 4 year old busy.  Brooke is doing pretty good.  She went all day with no pain meds, not even tylenol.  She played barbies, dress up, and made brownies.  But then, she was tired so we came to the room to watch a movie.  She was trying to get on the bed.  Her legg slipped off bed and she was jarred backwards.  I saw the look of pain all over her face.  I wanted to make it better but could not.  She screamed and cried for a long time.  I finally got her comfortable on my lap.  After some medicene and a few hours of rest, we were able to go get some dinner downstairs. 

While downstairs for dinner we met a boy who is here from Russia.  He had open heart surgery one month ago.  He looks great, and is moving around like nothing ever happened.  I look at him and Brooke and so many of the other kids here, and see strength and courage!  One little girl we met had sickle cell.  She became a quick friend to Aidan.  Conversations she had with my mother revealed that she had deep awareness that her life might be short.  And yet she was happy and trying enjoy life. Such little people that try so hard to make their lives normal. I see it also on so many of the parents faces here too.  Many of them are restricted with language barriers, and yet they jump in to help one another make coffee, hold the elevator and so much more.  It is good to see community even where people are complete strangers, walking very difficult paths. 

Tomorrow stitches and staples come out.  Praying that this goes as smooth as possible.  She keeps asking when we can go home.  I hear her!  Boy my bed sounds so nice right about now.  Plus I am missin my hubby and Aidan.  I know the time is coming very soon. 

Thanks again for support and friends who are praying.  It means the world to us.  I know my post lately are a bit frazzled and scattered.  THis is my brain right now, so please excuse.  I want to sound intelligent, but quite frankly do not have the energy!  :) 

A special prayer tonight for my wonderful friend Courtney and her beautiful girl Taylor.  Taylor is having surgery tomorrow in Ohio on her Kidney.  My prayers are with them, for strength and courage.  They have had a rough year and yet, they have remained strong in their faith.  They are a great family, and amazing role models!  Love you guys!

FREE!!!!

Yes we left the hospital last night!  So good to walk out of that place with my little trooper!  Brooke is doing well.  In fact, she refuses to take her pain meds. (She hates the taste)  So we have to only hold her down for the valium.  Then she is taking tylenol for pain.  The nurses said she is one of the hardest kids they have ever seen to get to take meds.  We really tried every trick in the book.  It came to just holding her done and getting the meds in as best we can.  The nurses asked if she was stubborn, ummm well yes she is! :)  So now to it up to mom and me.  Fun! 

We will be at the RM House until Thursday morning.  We can leave then.  She will have her stitches and staples taken out on Wednesday.  For now, we are just trying to rest and feel better.  Mornings are the hardest because her neck is so stiff.  She has to do exercises to strengthen her neck.  She does not like them, but is trying.  We are using heat packs to loosen her neck muscles. 

Her aunts and great grandma sent her packge today.  Brooke had so much fun opening it up.  I love to see her smile!  I know we are headed for better days.  My prayers are that they last.  There is always that chance that only the headaches will get better.  Time will tell. 

THanks again for prayers and encouragement.  It is amazing to have our family lifted up!

Surgery Day 4

Well you have good days, and then you have bad.  Today was our bad day!  Brooke is actually doing better physically.  But emotionally she is a mess.  She spent a lot of time in playroom today.  She also spent a lot of time fighting us on taking meds, changing her pants, and drinking.  Brooke needs to drink more, take her meds good, and go to the bathroom better toleave the hospital.  Right now we have not met any of these criteria.  The playroom is also closed tomorrow.  And half of my relief team (Tim and Aidan) leave tomorrow morning.  I am feeling a little nervous about tomorrow,  She did so well today whenever Aidan was around.  I think it gave her some kind of normal. 

We also dealt with an unpleasent room mate.  She is 22 and in the PIKU.  Not sure why???  But her mouth and her boyfriends mouths have been awful all day.  To make it worse she was treating her mother terrible.  The girl has Chiari.  I just kept thinking waht if this is how Brooke will be?  What if she has this anger as an adult?  I started to slip into this sadness.  As Brooke yelled at me, I felt the tears come.  I looked at one of the Child Life Specialist and said, "I need a minute."  I went to the bathroom and prayed, washed my face, and pulled myself up off the floor.  I went back in the room, looked at Brooke and said, "I am your mother.  I love you and want you to feel better, but you will treat me with respect."  She looked up at me and said, "Ok mommy, I love you."  I know this is a life long road we are on, but I know with a little faith we can get this life thing done!  :)  Praying for a better day tomorrow and a safe journey for 2 of my boys!

Day 3- Post Surgery

Well today had some good and some bad.  Good- Brooke sat up in a chair for 1 hour and 15 minutes.  She had her arterial line, cath, and one IV removed.  She got a sponge bath.  We walked over to playroom and painted a picture.  Bad- The pain is still bad at times.  She is getting more energy which means she fights a little more with the exams.  They are starting to switch her to oral meds.  She hates these!  She literally has to be held down, have her mouth squeezed open, nose plugged and medicene forced down her throat.  One nurse commented she had met he match in Brooke.  I said, "Yeah she has a lot of fight in her when she wants to."  But she has to take the meds.  Please pray we can bribe her with something to get them down. 

I was reminded today, while watching "Up" that everything of this world should be held lightly.  Even though we desire our bodies to be perfect, they are not.  They were designed to rely on a higher power.  We have been surrounded today by some very negative people.  It is so refreshing to know that we are be watched over and loved.  It is a blessing to have friends and family.  I am so glad Brooke can have loved ones to wrap her up and lift up prayers in her behalf.

Day 2- Post Surgery

Brooke is doing ok today.  Pain has been pretty bad.  It is hard to see your child in pain.  It is also hard to keep asking for morphine and valium for your child.  But she is more peaceful after the meds.  Her face just completely relaxes.  You can tell when she needs the meds again.  They are already having her do neck exercises so she does not become stiff.  She sat up in a chair for 30 minutes.  This was very hard.  We painted her nails.  Just in case you are wondering- black with silver polka dots.  Her blood sugar is still fluctuating.  But she ate 4 jello cups, 1/2 cup apple juice and 6 bites of buttered noodles.  So we are making progress. 
Aidan was able to come say hi to her today.  This helped a little too. 
Short post because I need to go cuddle with Aidan.  Please just pray for her pain relief.  I just can't imagine what she is feeling right now.  As a mom I just want to make it all better.  Her daddy is trying to comfort her now.  They are watching all the famous princess movies.  Thanks again for all the prayers.  She told me today that she was like David with her stones from God.  :)
Love to all!

Surgery Day

What an amazing day!  From start to finish things have just gone well!  Brooke was a trooper this morning and marched right back to the OR waiting.  She was a little nervous about the hospital gown.  I mean they are kinda ugly.  But with some coxing and tears, she put it on.  They gave her some meds to make her a little loopy, and I was able to carry her back to the OR.  I stood next to her as they put the mask on for sedation. (the anthesiologist was so cool!  Very kind.) As she drifted off to sleep, we named all the colors of Bubble Gum!  Dr Bolognese helped us and even comforted Brooke by rubbing her legs.  With a high five from the anthesiologist I headed out.  Dr B says to me on the way out..."Wish me luck!"  Funny Guy!

We waited 8 hours, and got great news!  He was able to not cut the c1 vertebra.  He feels this will keep her from having a wobbly head and needing a fusion.  He had to make a slightly larger incision.  But all of her cerebellar tonsils are back in her skull cavity.  He used only a small bovine patch.  He is confident this was a good surgery. 

Aidan was then most upset because he wanted to see his sis.  I told him it just was not gonna happen.  With many tears we made our way down the elevator.  As we step off the elevator, there she is!  Brooke right on her hospital bed!  The anthesiologist called Aidan over so he could see Brooke was ok.  They then took her on the elevator to PICU while Aidan went out of the hospital smiling! 

So Brooke was resting peacefully in her room.  She woke up with a scratchy throat from the tubes.  But then she promptly asked "Can we paint my nails?"  Gotta love that!  Then a little later she wanted to color.  Poor thing she would not even be able to hold the crayon right now.  But at least she is positive!  She looks good.  Her blood sugar is low, but then she has not eaten since yesterday. 

I was super sad to leave her, but Tim is taking the night shift so I can be with the boys and help my mom.  Was kinda questioning leaving.  I get back to RM House and Aidan is having an asthma attack.  Of course I remembered his machine, and meds, but forgot the face mask!  So after a little while my mom and I rigged a way to get a dose of allbuterol to him with his machine.  He is now sleeping peacefully.

Thank you all for prayers.  With these prayers we managed to survive a very hard day!  We truly felt wrapped in love!  I can't imagine not having all of our family and friends.  Aome people might say fate or karma, but here we like to just call it Faith!  And in the end, I had smiles from all my kiddos and my hubby!  Can't ask for anything else! 

Tests and more

Today was filled with pretesting, and trying to explain to a 4 year old what this is all about.  Brooke did really well with most tests.  She sat so still why they took her blood and barely even wimpered.  But when they put that blood pressure cuff on, she lost it!?  Go figure.  Then we tried everything to get her on the CT Scan table.  Even taking a CT Scan of beloved lambie.  But no luck.  She would not go after two attempts.  So we left the hospital to go get the hotel for Tim and Aidan.  Which was amazingly complicated!  Just a funny side note, the room they are staying in is on floor 2.  Then the lady at desk tells me all of floor 2 is a parking deck.  I really do not speak the language of NY.  :)  After this it as back to hospital to see if we could get an x-ray done.  We arrive only to find out the script was not faxed over.  Yikes.  We made it back to RM House in time for dinner and even fit in grocery shopping!

Tim and Aidan made it in one piece.  Aidan walked in to see us and promptly announced, "I am never movin here, so don't even ask!"  Gotta love kids honesty!  They where stuck in bad traffic.  As were we yesterday.  2 1/2 hours in NY traffic is not pretty.  If you have not experienced, please do not even comment. :) 

Surgery is set for 8:30.  We arrive at 6:30.  She will spend her entire visit in PICU since the children's wing is under construction.  She seems to be handling everything well.  She loves her scar book, so thanks to all who helped with this!

Wanted to share this amazing video my sister Rebecca made!  Much love to all!

Never Say Never

I have to say when Brooke talks about how she wants long flowing hair like Rapunzel, I am right there with her.  I love my hair long.  All the fun stuff you can do with it, braids, twists, or just throw it up in a pony tail.  After cutting my hair the last time for locks for love, I said never again.  Oh how quickly things change!  Knowing that Brooke was going to have really short hair and a portion shaved, made me realize how silly my hair obsession really is.  I can't take away my daughters pain, but I can cut my hair short to be like her.  And I can learn to not have vanity over something like hair.  So now me and my bug can share something, however small it might be.

Brooke is such a good sport.  I know every snip for her was a struggle, and yet she got through it.  I love her courage, and just her attitude about life.  Everyone has been telling her how cute her hair is.  She looked at me today and said, "I wish people would quit talking about this hair cut.  I know it looks good."  I worry about her sometimes. The scar she will have, the pain she faces, and then she comes back with comments like this.  God made her so much stronger than me!  I thank Him for that.  Brooke is proving that she can handle this, and even with her own little humor.  And I hope she learns to take never out of her vocabulary.  To never regret, never forget, and never say never!

Love One Another

I heard this all my life....Love One Another.  My parents, church, school, I was reminded of this often.  I have tried my whole life to love others the way I want to be loved.  Sometimes this hard.  But I have learned to never hold grudges, quickly forgive, and love those I could hate with a compassionate heart.  Most days I do not even think about it...it is just the way God calls me to live.  It is freeing, without hate in your heart.  And it is amazing to see all the good around you.

Over the past few weeks, love has surrounded me and my family.  In so many ways, blessings abound through all the junk.  I teased my mom that the rain did not just come but a whole hurricane.  How does that saying go... bad things come in 3's.  Blah!  Don't believe that for a second.  We have stopped counting over here.  But the good news is, with each scary turn, a good thing appears.  Maybe some days it is just a kind word, or being able to lean on one another for comfort.  But somehow the silver lining is visible.

Today at church was a silver lining kind of day!  I am so blessed to go to a church where people care about each other.  They are not just their to hear a message and go on about their own lives.  They are there to find other people's hurts and try to ease them.  To walk with them on this journey and create a support system, a safety net.  What an awesome thing to have!  I just have to say I am so thankful for the outpouring of love shown to our family.  I can't list all my thanks here, because there are just to many people and I would forget someone.

I do want to share about a few girls who I just am in awe over!  These young women help me on Sunday mornings and other times throughout the week at the church.  Over the years I have watched them grow little kids to a better understanding of God.  Their hearts are so genuine and they do not mind sacrificing their time for others.  You do not see this much, and I jump at the chance to say how impressed I am with them.  But to top it off, they went out on their own and had bracelets made for Brooke!  Lovely Little Ladybug Bracelets!  They did not ask, just acted.  They loved on my little lady!  And for that I am grateful!

To all of you...Thanks!