long day

our day started at 3:00am. Brooke woke up and didn't go back to sleep. she has been very restless and agitated.  come 7:00a.m. I was feeling the effects of just 3 hours of sleep. I knew several friends had been praying, and knowing I needed the encouragement to finish the day and finish well I called on them for help. by 1:00p.m. brooke was less frustrated. however, just over an hour a go... she has been extremely upset! I gave her some loritab thinking she was in back pain. she's very aggressive and verbally upset (yelling). she still has not slept since 3am.. and neither have we.  i just hurt for her...wanting her to be comfortable, at ease, and especially I want her to sleep. she has been thru a lot in the last week but I'm confident the Lord is listening..and in His timing will make all well. 

whatever it takes

recovery with brooke continues to be a constant struggle. between her behaviors hitting her face and her wanting to get to her back (partially because of a rash due to the self-adhesive dressing) it is a constant redirection, or holding her arm temporarily. today,  for example, after waking up at 5am, bill and I were laying in the bed with her consoling her, holding her hands until she drifted off to rest again. she ate some breakfast which consisted of fruit, yogurt, and a slice of pizza. she kept wanting to touch and scratch her back and hit her face. it was challenging. we gave her a shower to make her feel better then, the LT staff came at 10;30 and stayed til 1:00. during this time, I got her lunch together, did laundry, and sat in my hammock for a bit. our afternoon was a bit more in tense for she got more unsettled, so we gave her some medication to calm her down. I made her dinner, she ate well but behaviors have increased again this evening,  I cannot lie, at times, it is extremely stressful and I wonder if we made the right choice of going thru with surgery. you question everything at times like this.  on a brighter note.. she is by my side and I desire to do everything to help her get thru this...and I will do whatever it takes. 

collapse

every now and again I see how helpless brooke is without someone with her at all times. a few years ago our whole family, including brooke, went to Nashville. while visiting, we went to Opryland Hotel. the hotel is my moms favorite, so we enjoyed walking around seeing shops and enjoying each others company. we decided to take the elevator up to another floor and before you know it Brooke had gotten in the elevator and the doors shut!  within seconds my mind raced to what could've happened when the doors opened again on another floor without us.  she wouldn't know where she was. she wouldn't be able to say who she was with or how to find her family. and at the time, she would not have been able to say her name to those trying to help her. helpless. however, we quickly pushed the button and the doors opened before it speed off to another floor. I remember grabbing her, holding her, telling her it was "ok." not only is Brooke helpless, but so am I. today a dear friend said something to me that reminded me of my helplessness. the phrase she said was, "collapse in His arms." being the thinker that I am I looked up the word "collapse." Webster puts it this way, "to fall abruptly, to break down completely,  to cave or fall in, to fall helpless." I couldn't help but see myself, or those that know Christ, fall helplessly in His arms..almost like i was fainting.  I love the idea that Jesus is my all and all. I love the fact that when I fall helpless or when I'm wondering helplessly as Brooke does...that He is there without any hesitation. and, in doing so there's no need for me to speak or utter a sound...He knows.  its then He grabs me, holds me, and tells me, "you are ok."

thank you

Brooke has done so much better being at home. we are thankful/grateful that some of her support staff are helping out daily. her school, the learning tree, are coming over twice a day for a few hours to sit and help her. someone needs to be watching Brooke, even while sleeping because she still is exhibiting behaviors (hitting face) and wanting to scratch her back. speaking of which, Brooke has developed a rash on her back, either by the adhesive or iodine. it really is irritating to her. yesterday, after putting some cream on her back she hollered out, "thank you!" it was so appropriate and it made me smile and laugh:) I bought some new dressing for her back, so hopefully, coupled w the anti-itch cream she will be doing better.   she slept so well last night. it was the best sleep she has had since Monday. rest can do a lot of good, I've heard:) she woke up briefly, lifted herself up, got out of bed and went to the bathroom. I was shocked! she is still asleep:) today, we will do more waking and sitting, plus, the doctor said she can take a shower!! she's been scratching her head so much...I know she'll feel tons better afterwards.  I didn't really tell you much about the actual surgery. dr. nimits said he was able to correct 80% of her curve with the placement of 2 rods. she did not have to have any blood transfusion.  that was huge! she lost a bit, but they were able to save hers. all in all, the surgery went really, really well! I'm so thankful for skilled surgeons and nurses.  I'm so content caring for my girl. she is the brightest spot in my life and I love her dearly. Im so thankful for the Nelson's, the M's, and Rene and Patrick for taking care of our job responsibilities at the ABCH so we can be with Brooke during her recovery. I love you all. 

home

it's funny to me that the day surgery was originally set is the day we came home. it sure is good to be home.  these past couple days have been a journey. yesterday Brooke went to a room. we were suppose to stay there til Saturday or Sunday; but, don't tell Brooke she'll change it on you. last night she couldn't rest. her behaviors (from being in a different place) were making things very challenging. since we could not use wrist restraints her face, her arms, my arms, hands, and the nurses were getting a beating. it got better once she went to sleep but come "vital rounds" at 2:00am she got heavily upset. this in turn got me upset at the circumstances because she just doesn't understand. by 3:00 she was still going strong. after trying everything to get her comfortable I asked for some pain meds for her. at 4:00 she is still upset and gets another round of medication. by 5:30 I am mentally, physically exhausted. I asked the nurses for a transfer back to ICU. knowing her hands would be restrained and she wouldn't be harmful to herself, most importantly, and to others. they told me it couldn't happen. she was stable enough to be on a regular floor. however, they would get in touch with my doctor and ask for a transfer.  long story short...brookes doctor said "you are free to go! she is medically stable enough to leave."  wow.  we basically pulled everything together and got our orders to leave.  the ride home was good. Brooke walked right in and laid in the bed. her words, "it's ok." (theres much more to share, but later... now we rest)  thanks for your prayers! 

walking day

Brooke had a good day yesterday. with help of a physical therapist she was able to sit on the side of the bed, take 2 steps, and sit in a chair for 30 minutes. we had hardly any behavior problems with her yesterday. go Brooke! she has continued to say, "it's okay" throughout her day; however, yesterday she formed a sentence of "I wanna go". I love those random sentences that are just too far in-between.  yesterday afternoon she took a few bites of solid food. even last night she had a little bit of food.  last night seemed hard for her. she was moaning a great deal so they gave her extra medicine to ease the pain. she didn't sleep really well last night.  this morning they removed the draining tube from her back which made her pain increase. they gave her extra medication. bill was here last night and early this morning.. he told me as we switched out that she kept asking for me. that's just precious.  today is a big day. she'll start walking today. I can't wait. sorta like your one year old learning to walk-for-the-first time-can't-wait. after she walks she'll go into a regular room.  pray that the Lord gives brooke understanding, peace on every side and that we have little to no behaviors as we transition to another floor.  thank you!!

today's goal

today Brooke is doing really well. I think her fear from yesterday has escaped her and she is much more at ease. however, today's plan is to get Brooke sitting up in the bed and possibly taking a couple steps to sit in chair, so this may disturb her some. the PT will come sometime today and encourage this movement.  her doctor wants her to stay in ICU again tonight. then to a regular room some time tomorrow. she will be the hospital, more than likely, til saturday. thank you for your continued prayers. 

tomorrow is coming..

we are now in ICU. after we got in, she started to be rather alert. she kept saying, "it's okay," seemingly to try and convince herself that she was. along with her alertness came moaning and tears. she was given morphine and soon after seemed more comfortable. she has the strength of a horse and, at times, is pulling herself up to sit. with encouragement we are helping her just to relax.  she has gotten sick twice because of medication. each time, having to change linen which upsets her. the language barrier is making me mad at autism. I wish I could jump in her head for a moment. we have her hands tied down because in the past she has pulled out IV's straight out of her arm. this, I think upsets her more, but I'd rather her be safe. my prayer is she stop fighting the pain herself and try and rest. i know she has got to be so tired. we will be in ICU til tomorrow sometime (if she is doing well).  thank you for your continued prayers. I know the Lord has her. she is a trooper and so brave. today has been tough, but tomorrow is coming. 

surgery update

Brooke has done remarkably well this morning..laughing, smiling, giggling.  she went back around 7:30 to put her to sleep. an ENT doc has already reported that she did not have anything lodged in her nose. he removed large amounts of wax from both ears.  they just called and said the surgery has already started and will report back in 1 hour. 

may 22, surgery set

update: surgery set for Brooke, Tuesday May 22. we will be at womans/children's in our area. arrival is 6am with a 4 hour surgical procedure.  the MRI shown she was able to go on with the surgery. it Also showed that the majority of the scoliosis is lumbar area (mid to lower). therefore, the rod will not go all the way up towards the neck. this will give her some mobility issues. we will know more about that during her recovery. after surgery she will be in ICU then to a regular floor if there are no complications.  we are confident the Lords hand was in the move of the surgery to tuesday and confident she will do fine.  I will be blogging throughout the day tomorrow.  thank you for your prayers, love, and concern!! 

hard day

Brooke's MRI went well. once the IV was in she drifted quickly. the procedure lasted about an hour. then, following, she had another small procedure done. they will use this scan as a guide/tool for the surgery on Friday.  apart from today's test, Brooke's behaviors have increased dramatically since yesterday. it's very odd behavior as I saw and as I heard her staff report.  for several months now she has been hitting her face pretty significantly. her staff implemented a helmet procedure to protect herself. however, yesterday she poked at her face so badly her nose started to bleed. what made it strange was her "giddy" behavior. today I even noticed she was extremely happy throughout each behavior displayed. typically, her facial expressions/emotions are complete opposite of what we have seen in the last 2 days.  this, and other circumstances, are going on that are making me question and seek answers in order to help her.  today was hard for her.  today was hard for me. 

it's the little things.

it is the little things in life.  a few weeks ago, bill, the boys and I went to gulf shores on our off time/spring break. it was nice to be away from our area and spend it focusing on the boys and of course...the beach.  one afternoon, ethan wanted me to sit in the hot tub with him. I went...but what you don't know about me is that I really don't like "public" hot tubs.  after getting in, a couple of girls got in as well. we sat quietly. one of the girls commented on Ethan's "Jesus" shirt. I then started listening to their conversation. I'm such an ease dropper. haha.. they spoke of many things... missions, boys, beach, and etc.. Then, one of the girls said, "could you fix my tape?" that was weird... I thought to myself. I watched her get out of the hot tub and noticed she had a long piece of surgical tape down her spine.  before she walked off, I blurted out, "hey, did you just have back surgery, like scoliosis?" she responded, "yes ma'am I did in January." I couldn't believe it. the chances of meeting someone like that was slim. well, there's more. I asked her lots of questions, and she was sweet to answer and share her experience. I told her of brooke and the reason of my inquiring mind. I told her to have fun and she left. moments later, she walked back in the pool area and asked, "I don't mean to seem weird, but can I ask your daughters name so I can pray for her?" wow! really! are you an angel? she then told me .. can you tell her that ... "she'll be just fine." "yes!" I said, "I'll tell her." before she left I asked her age.. "15", the same age as Brooke.  her name was Lindsey... but that day she was God's little messenger of peace.  lindsey, wherever you are... thank you!

mother's day & MRI

had a great mother's day with brooke. she came over for a little visit and had dinner with me and 9 boys. whew! we made it brooke. :)

(in the pictures above she was enjoying her new ipad and a ice cream bar.)

on friday, may 18th, brooke will have an MRI at the hospital. they will put her to sleep for this procedure. we will get the results on the following monday when we go in for pre-surgical appointment. i'm confident it will all go well. please pray for brooke, as next week, we will be letting her know of her surgery thru the use of a story board. thank you!

whats to come

watching her sleep and knowing what's to come in the days ahead are a bit overwhelming to me.  while she rest, her face twitches, she moans, her eyes close harder, her body shakes a bit and her hands stay clasped together on her chest.  before she fell asleep I sang "Jesus loves me" to her. each time I paused to say "yes, Jesus loves Brooke", she chimed in to say her name. beautiful.  there are some things I'm dreading. one that I'm not, being able to sing to her and watch her sleep nightly.  and in confidence i know that Jesus will be doing everything else. 

surgery set

Brooke's scoliosis surgery is set for May 25. during the month of May she will have many appointments in preparation. I'm excited to share that after the hospital stay she will stay with us for several days. her school will be helping out with 8 hours daily. I couldn't be more thankful! Her school is also working on a storyboard that will help her understand about her surgery.  recently, we got an iPad for Brooke. we are in the process of learning how to use apps to help her communicate, understand feelings/emotions, and allow her to play games as well. I've heard some encouraging news on how the iPad is encouraging communication for those that have autism. I'm excited to see how Brooke will gain new insights.  please be in prayer. many changes are going to be transpiring in the next few weeks as we prepare for her surgery and recovery. 

personal encounter/surgery

In October, 2011, Ethan (youngest son), went to a birthday party at a nearby church. Months before this, I had painted a picture of Jesus (see www.shabarministries.blogspot.com) at this church and they had it out still for the congregation to see. this past January, i got a phone call from a woman who attended that birthday party that Ethan went to. She had seen the painting and wondered if i still painted for groups. to make a long story short, i did a palm painting for her church this past week. it was a wonderful experience sharing at her church. i must say, even months prior to this event, God ordained that i run into her and we have a conversation that would give me hope, insight, and the confidence i needed for Brooke. a few days before i painted at her church, we met (for the first time) and went over the events of the day. before leaving her that evening, in the parking lot, we talked about our families, our lives, and what the Lord was doing in each of our worlds. i shared with her about Brooke and the news concerning her scoliosis, the surgery she needed, and my fears of it all. she asked me, "dani, who is her doctor?" i said, "Dr. Nimits." She responded with, "i work for Dr. Nimits!" what?!! are you kidding me?! the timing was impeccable. God alone was capable of ordaining this meeting, a God who reaches into the depths of our souls, hears our cries, and meets our needs. This is my God...setting up a very personal encounter.

i walked away that day with more confidence than i did when i drove up to that church that night. i know that the Lord is not only personal to me, but, as brooke's mom, He is a compassionate Father who gives direction and peace to me so i can help/care for Brooke when she is not able to do so for herself.

we met with her GP yesterday, looking at the X-ray showing the curvature and observing Brooke, and know that we need to go ahead with the surgery. from my understanding, the surgery (although complex involving screws/rods) is fairly common. Surgery is about 4-5 hours long and she will stay in the hospital 4-7 days (depending on how her body responds). i do know that post-surgery she will be out of it for the most part, but after that she will be able to sit up in bed, and walk by the time she leaves. my concern is, of course, brooke's pain tolerance. she is not able to express when she is hurting or if she needs anything. however, i think the Lord gives us moms a discerning spirit and i'll be trusting that He will give me the insight i need to take care of her.

If we do not do the surgery, we are certain that the curvature will continue to increase and will impede her health in several possible ways. scoliosis can cause several problems involving the heart, digestion, breathing, and her walking ability.

the surgery date is tentative at the moment but may be as soon as May 25. up until then, i'll be posting updates on her health and of course other "raw moments" between daughter and mother and autism.

i am thankful for your prayers.

health update:the Instrument

"there are some things that are too numerous to me right now, " i wrote in my book a few years ago...and this week i could have penned in that same line.

If you read previously, Brooke's coordination has been causing falls, stumbling into things, etc.. and we have been seeking to find out the meaning behind this. this past Thursday was her orthopedic appointment and after her X-Ray it showed the scoliosis in her back had increased 13% in less than a year to 43%. the doctor firmly and clearly stated, "surgery is needed." WOW. just like that i was picturing that day for brooke...asking questions in my head repetitively like a auctioneer.

leaving the doctor's office brooke had no idea we had tentively set surgery for her, she had no idea of the whys/whats/hows. watching her, i wondered if she was in pain and if she could say anything at all....i wanted her to tell me. something. that moment.

as i watched the doctor measure the % of her curve on the X-Ray, i couldn't help but remember a story i had heard several months prior. we have a dear friend, John Pack, USCG (retired) that was our Sunday School teacher while at WMBC in our area. As a pilot, John would go on rescue missions after rescue missions....and as our teacher, he would come in and share some of his experiences. One day he shared a story that has obviously left a mark on me. He shared as he flew into bad weather...seeing nothing in front of him, having not to trust in his emotions, feelings, or even gut but to trust in the plane he was flying. (a bit freaky to me). however, he said this, "in that moment, you have to trust your instruments." those instruments don't lie..and in the midst of a crazy moment when you can't see the hand in front of your face...you've gotta trust in the instruments. The Instrument (God). wow.

Looking at the X-Ray in the moment, i knew something was obviously wrong...and trusting in the doctor and the x-ray at the time seemed pre-mature for my questioning and wondering mind.

at the moment, we would appreciate your prayers, as yes, we look into this. we still need to talk to her Rett specialist and her GP. it is a bit unnerving wondering how brooke (non-verbal) will do post-operation. i understand that this is a big surgery for her, but will improve her quality of life.

we are trusting in the instrument Himself, Jesus and His word...to lead us and guide us as we care for Brooke.

(For those that don't know brooke has Rett Syndrome and most children do suffer from scoliosis. Most of the falling/stumbling is caused by this neurological disorder.)

brooke's day

brooke turned "15" yesterday. it was a beautiful day...the weather was perfect, sunny, slight wind, and after picking up brooke at the school, it was all smiles. previously, i had picked up cupcakes at a local bakery, made lasagna (her personal fav), had gotten 15 colorful balloons for her to release into the sky, and had gotten her a few gifts i knew she would enjoy. it was going to be a wonderful day! i was determined!

but...
i had to take her back early because she was exhibiting behaviors too much for the boys at the children's home to observe. it was a difficult choice, but nevertheless, it had to happen. upon leaving the house to her group home, we also left the lasagna cooking in the oven, her gifts still waiting for her to see, and a box of cupcakes ready to attacked. right before she left we did manage for her to release the balloons. (the pics are on facebook if interested in seeing).

to be honest, i was disappointed. once a year we celebrate someones birthday, the day they were created by the Almighty God...and i had wanted this day to be special for her. i had wanted each moment to be all smiles, to express to her we loved her and that she was indeed special and precious.

i got home from that drop-off just thinking about my day with her, and even 15 years ago, what my day was like with her. then....ever had one of those moments when someone says something to you in a moment when you need it the most? well, i did...in that moment this is what my dear friend said...."you KNOW that this is why we celebrate birthdays on odd days, and holidays on the day after, etc...because we have to. AND BECAUSE WE CAN. we are accepting enough to know that it's about the love all year long-not just on the designated day. tomorrow is another day. cupcakes are always around somewhere. and so is your love."

after i read this, i wept...and thought several things..

she was correct. life itself is a gift and we should celebrate it daily...for we do not know when that life will be taken from us. on another note, autism is crazy...the things you have planned for just one day MAY NOT happen at all because the circumstances surrounding are JUST NOT in our control. birthdays are great and i love celebrating in them, but it made me reconsider that TODAY is a moment to celebrate the lives that are around us. i may have looked at this a bit to serious (i do "think" a lot though)....but i do like the perspective i have now. Today, i'm looking around to see who i need to celebrate. For, tomorrow, i may not get that chance.

in taking brooke back to her group home....over and over and over again she repeated something i've heard for a really long time. she said, "it's ok." each time she said it i was reminding myself that, yeah, brooke, it is ok. then, there was a long pause in the speech. when she spoke again, she said, "I'M ok." now, i've never heard her say that...but it was as if she was reassuring me that she was ok. She didn't know it was birthday, per say, but what i think she did know is that i love her dearly, and i'd do anything in the world for her. what i think she knew is that she was in the midst of an Almighty God that formed and made her and loved her......and she was OK.

she...

when she walks into a room you know it. she can make you smile...just like that.

her laughter can ignite a downward soul. her words are few but real. her eyes can read you like a book. her tears will drive you to seek answers. she can make you dream, dare, discern the truth. if you'll watch carefully she can allure you to her Maker. if you listen...she'll tell you things only God Himself would whisper in your ear. she craves for dependence on her God...You can see His protection...hear the angel wings whisk by her side. if you risk getting to know...just for a moment...she'll allow you to see things in yourself you would dare to change...and in turn, you'll be blessed.

i know...i'm one.

health update: addition

Brooke went to her seizure doctor today. it could be her stumbling/falling is due to her seizure medication so they are switching to another kind.