takeupthiscross.blogspot.com

Wow! It's been a long time!

2011-09-02T08:19:00.000-07:00

We are so sorry to the many followers who continue to ask...When ARE YOU GOING TO UPDATE? well, here it is!

Daphnee is moving forward! (However, not walking without assistance yet.)

She had a great summer...we had 4 out of 6 therapies/week at the swimming pool. She gained much strength and mobilibity in using the pool. She is able to walk independently in the water, using only water wings to maintain her balance. Daphnee has become much more verbal, using many more words and most of them appropriately. One of her favorites is telling us her food is "tasty". She enjoys eating as much as the rest of us!

And last, but far from least...She continues to be SEIZURE FREE and off all seizure meds!!! We praise the Lord for His many blessings and continue to pray for continued healing on Daphnee.

If you would like to pray for Daphnee...please pray that her legs would strengthen and that she will be able to walk someday soon...as you can see in the picture she is growing and her mommy and daddy are growing weary from carrying her around! Aso, she really wants to chase her 2 crazy brothers!

In His hands,

Melissa

Dreams becoming Reality!

2011-03-07T20:12:00.000-08:00

It's hard to beieve it's been one year since surgery! We miss our family and friends in Phoenix and we definitely miss the beautiful sunshine, but we are so thankful this Feb/March to be home and be TOGETHER as a family.

We rejoice in God's provision of Daphnee as she is making dreams a reality for us all! Daphnee has been seizure FREE for one year! We just finished our last dose of Keppra (seizure medicine) and now we pray for continued results and God's hand that she will remain free of seizues!

Daphnee has great desire to be a part of whatever is taking place around her including... chasing her brothers, eating the same foods as we are and wrestling with daddy. She squeals with delight and is beginning to communicate using some words and some signs for communication or just having a 2 year old temper tantrum!

To conclude, we definitely have a TERRIFIC 2 year old on our hands that has some SPICE and we give God the glory for the past year of learning more about WHO HE IS and HOW HE WANTS TO BE IN OUR LIVES DAILY! Hoping you experience Him today!
in His hands,
Melissa

Finally an update, but NO picture!

2011-01-24T19:57:00.000-08:00

To those of you, who have been waiting patiently and impatiently...I finally have a moment to share little! While Daphnee continues to make awesome strides, the rest of our family struggles to stay healthy! Charlie was in and out of hospitals/ER rooms over Christmas and New Years. Reasons: he had 6 kidney stones, which led him to have stint surgery and resulted in a reaction to one of the medications he was put on...now time to heal! Our boys have experienced all kinds of illness-strep, stomach virus and now high fevers...But YEAH Daphnee and thank you Jesus she is healthy!
Daphnee continues to charm us and everyone else with her beautiful peronality and big brown eyes. She is very personable and demands everyones attention to the point of moving your head if you are not looking and speaking to her! Daphnee desires to walk and loves to hold your hands and take steps like a big girl. She scoots around the house at a rapid pace on her toosh chasing the boys when no one is available to walk her.
On Wednesday, we will once again visit her "TEAM" of doctors (approx 13-18?) in Sioux Falls, Children's Castle. They will meet with us in small groups, have a team meeting and then we will start a plan of attack for the year 2011.
**On December 20th Daphnee was OFFICIALLY adopted into our family! And yes there was a blizzard that day, but God provided travel for the Judge to make it to the Courthouse in Britton!
Last, but NOT least we are fast approaching the 1 year anniversary of Daphnee's hemispharectomy and she is still SEIZURE FREE!!! To God be the glory...we are so grateful.

sorry about no picture-my camera died!
In His hands,
Melissa

Our princess

2010-11-03T19:03:00.000-07:00

This is our lil Tinker Bell!

She is making great gains and for this we praise the Lord!

1. She crawls commando style one sided (using her left arm and left leg primarily), but gets anywhere she WANTS!

2. She complains when we do not include her in eating Halloween candy, or if we skip an item from the dinner table (food is important)!

3. She does NOT use a lot of words, but her arm flails and her voice demands that she be included in EVERYTHING the brothers get to do!

4. Last, but not least...the "legborgini" robotic walker seems to be helping her stand straighter and take assisted steps! It's not going to happen over night, but her personality is one that takes it's time, loves life and well... isn't going to rush matters :)

Daphnee's personality is by far her greatest strength and greatest attractor. She is pleasant, loves to attract attention and continues to be a part of the media. Once again Daphnee starred on Kelo-land out of Sioux Falls last month.

Daphnee's schedule also includes a lot of time on the road for doctor appts. Last month, we were out of town 10 days for doctor appts. (Most of the appts are in Sioux Falls). I have adopted the idea that Daphnee is the princess traveling to her "castle" and I am her horse and carriage:)

As for now our schedule looks to slow down for a couple of months and we are most grateful!

May you all see what the Lord accomplishes in Daphnee and our lives as we try to live out His plan. "Christ in you brings hope of all the great things to come." Colossians 1:27

In His hands,

Melissa

In His hands

2010-10-06T19:25:00.000-07:00

In His hands, Daphnee had a clear EEG report with NO seizure activity! Much praise to the Lord for His deliverance! We will continue seizure medicine until March when we visit our neurologists again and then decrease the dose if all is going well. A child is not considered seizure free untl 5 years have passed (without seizures).

Next, Daphnee had a follow up with her orthopedic surgeon and her physiatrist (doctors for her feet/legs). She received yet another walker the "robotic walker" that will teach her how to take steps. However, I am her robot moving her as the brace responds to our movement and kicks her foot out in correct position. I nick named this brace her "Legborgini" as the price resembles one of a vehicle-please pray our insurance will take the brunt of this purchase.

Last, but not least Daphnee will have many, many more appts in the near future; eye exam, hearing test, spinabifida team (18 doctors/therapists/etc) to recollaborate their thoughts and future plans for our Daphnee. We feel overwhelmed at times and just want to quit, but the Lord reminds me..."For I know the plans I have for you/Daphnee", declares the Lord "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Daphnee is here for a reason and we must pursue that purpose for His glory! I know it's more rewarding to focus on: He has a plan for her and I get to be a part of it then to complain and wallow in my misery of traveling to so many appointments, equipment training and therapies, etc. but in all honesty...somedays I lose focus!

Thank you to all who remember us in their prayers and remind us of His plan and not ours!

(picture: our family took a couple of canoe adventures this summer/fall)

In His hands and not ours or the doctors,

Melissa

Monday, September 27th

2010-09-21T19:25:00.000-07:00

FYI:
Daphnee has 4 appointments on Monday, September 27th.
5 a.m. Daphnee and I have to wake up, so she is sleep deprived for her 8a.m. EEG, somehow I get to join in the sleep deprived category too???
8a.m.-her first EEG since surgery back in February, please pray that it is clear of SEIZURES!
10:30-fitting/casting for a new brace that will help her walk and hold a proper form.
11:30- training for mommy and Daphnee on how to use a robotic walker...sounds interesting. Wonder if it comes with a remote? ha
1:00-An appt. with Daphnee's neurologist to go over the EEG results-pray, pray, pray.

I will update after the appointments a day or two later.
In His hands,
Melissa

I'm in Control...

2010-08-16T07:11:00.000-07:00

Well if there is any question as to who is in control of this vehicle (Broberg home) there is one sure answer...Miss Daphnee! She continues to keep us hop'in from 6 therapies a week to new demands and some new strides. This past week Daphnee accomplished the task of getting herself up to sitting from lying down...We are so GRATEFUL! However, she believes that once she is up then MOMMY had better pick her up to praise her and take her to where she WANTS to go!? argh

The last surgery we had in July didn't seem to work...she continues to stand with her bottom sticking out and she has no real desire to crawl or walk. I decided it was time to move an umbrella stroller into the house to help me with moving her around...she is getting heavy!

Some days, I (mommy) just want to complain that things are not progressing fast enough, but then I have to stop and pray and hear that I probably am not learning fast enough either. God has a plan for us and His plan will play out in His time (not mine).

Yesterday in church we studied Philippians 3: 1-14 it was perfect for me..."Pressing toward the Goal" I want to know Christ and the power of His resurrection and the fellowship of sharing in His sufferings, becoming like Him...Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

This is my desire that all this pain, suffering, CHANGE in our lives will be for His glory and not mine!

In His hands,

Melissa

Baby Doll

2010-07-14T07:43:00.001-07:00

Our baby doll handled surgery very well! We had surgery at 7 a.m. on Friday and were able to go home that evening!

Praise the Lord our dear friends in Sioux Falls (Johnsons) let us invade their home Thursday night and then they graciously entertained our busy boys Friday, while mommy, daddy and Daphnee hung out at the hospital.

God continues to amaze us at His provisions...people-we continue to meet "AMAZING" people who take care of our needs in all places(Phoenix, Sioux Falls and in Britton). We are continually blessed by kind, caring people who stand beside us during this adventure in our lives.

Thank you for your prayers, Daphnee surgery went beautifully. We continue to see NO seizures!

Our biggest hurdles are: Mobility-walking, standing and crawling (she doesn't do any of these). She is also seeing doctors for hormone disorder, which they are trying to figure out. No answers yet.

God continues to keep us humble and leaning hard on Him-there is no better place to be as we are learning-humans make plans and God makes decisions! May you be blessed by our Creator today!

oop's= surgery date

2010-07-05T19:20:00.000-07:00

This mommy can't keep her calendar straight...Daphnee's psoas lengthening surgery is scheduled for Friday, July 9th at 7a.m.

Praying surgery will allow her to stand straight and make progress towards...crawling, standing and walking! I know we have been horrible at keeping this blog up to date, but Daphnee's big brothers have us running all over this place this summer! Bible School, t-ball, Reading program, swimming lessons, summer school and of course 6 therapies for Daphnee each week.

Please keep us in your prayers this week that Daphnee's surgery will go smoothly and that it will not upset all that is going so well with her shunt and hemispharectomy.

In His hands,

Melissa

My new toys?

2010-06-02T17:28:00.001-07:00

My mommy and daddy tell me, this is one of my new toys? Not sure I really like it, but I do enjoy watching Elmo sing while I stand in my "Stander". Mommy says it will help me stand tall and straight, but I still try to cheat and lift a foot during this therapy. The doctors said I need to stand in it 60 minutes/day(20 minute sessions)...I liked it better when it was only 20 minutes for the whole day!
We got to go to my castle again last week. (Children's Castle/hospital in Sioux Falls, SD) We saw around 18 different doctors/therapists/staff-whew I was tired. After 7 hours of appointments straight, mommy and daddy needed to find a little lunch and think things over. They said I will have to have another surgery on my legs-argh! But the doctor said "It's not a big wack job", not sure I was supposed to be gitty after that, but I saw mommy write it on her calendar-July 7th. The are going to cut my psoas (sp?)tendon, lengthen it and then hopefully I will stand up straight. Hopefully this will help me to walk too! Time will tell...that's what every body keeps saying. I say-pray, pray, pray. I'm tired of surgeries!
In His hands,
Daphnee and family

Finally we post!

2010-05-18T20:04:00.000-07:00

Sorry there is no picture! I will blog sooner and with a picture, since I will now be held accountable for stating so.
Daphnee had a neuro surgeon appointent in Sioux Falls last week, to establish a relationship with a doctor who could operate on her if we had an emergency. He thought she looked good and sent us home! It is always so nice to meet a doctor and do nothing more!

We finally have a date set for gaining more new information on Daphnee's leg mysteries (June 30)...no one is sure why she doesn't crawl, stand or walk. We use a "stander" for her daily. It is a stand that she is strapped to, to keep her upright and forces her to put weight on her legs/feet.

Daphnee continues to have 6 therapies weekly and the rest of our week is a blurrrrrrr with 3 little people in our home. ha, ha
Last, but not least we are so grateful for the sunshine this week which allows us to play,play, play outside. AND to scrape, scrape, scrape our house...we are some how going to paint our house this summer. A nice family project (anyone bored can join us any day, any week for the fun family project!)
Will update soon,
In His hands,
Melissa

2010-05-03T15:19:00.000-07:00

Daphnee is a little tired here, but she had an incredible day. The community of Britton held a benefit for our family. It was amazing to see all the people who gave of their time and efforts to help our family during this challenging endeavor. We are overwhelmed with the kindness, donations made to the silent auction, financial gifts and outpouring of encouraging cards and prayers. It is a great reminder of how important our family is...relatives, community and friendships. We are so grateful!

(picture-our 3 children with their cousins)

Daphnee update: Daphnee has had no seizures, she continues to have 6 therapies/week. The therapists work on skills to encourage her to crawl, stand, walk, talk, hold objects and so many things most one year olds typically do. Some days it feels like our delays are overwhelming, but then she makes a new sound, attempts to use her right hand, stands straighter and then we CELEBRATE!

Luke 9:23-"If anyone desires to follow Me, let him take up his cross daily and follow Me"

Some days, I just need to remind myself that this cross is His journey, His plan and not mine.

In His hands,

Melissa

Our TV Star

2010-04-13T11:21:00.000-07:00

For anyone interested... our family was on the news last night in Phoenix. You can view the story by clicking on the following address. One of our doctors (Dr. Buchhalter; epileptologist-pictured above) shows a small segment of Daphnee having a seizure and he also shows her brain MRI after the surgery!

http://www.myfoxphoenix.com/dpp/news/only_on_fox/story-of-a-haitian-orphan-4-12-2010

We also have another step to announce on behalf of Daphnee, she is beginning to put weight on her legs...she is trying to jump in her jumper. She puts her weight on her heels and bounces, but this is encouraging. She also thought she was funny, bouncing around in her jumper and saucer. Small steps, but still making progress! Glory to God!

In His hands,

Melissa

Easter Chick

2010-04-08T06:58:00.001-07:00

Well life is busy around the Broberg house, so my ability to blog is bleak. We had Jonah's 4th Birthday and Easter last weekend. Daphnee continues to keep us busy as she has 6 therapy sessions each week: 2 times/therapists(occupational, speech, physical)/every week to work with her. It is a blessing to have them come to our home, one less trip for our family!
For those of you wondering about my last blog in regards to spina bifida, I need to clarify...we have had MRI's and they cleary state that she does not have spina bifida, BUT since she is not attempting to walk or crawl and prefers to stand with assistance at a 90 degree angle we need to take the next steps to figure out the WHYs??? Her gluts (butt muscles) don't seem to work, her leg muscles are under developed and there are more mysterys to figure out.
In May we will begin to learn more about her legs, we will also have an appointment to meet her emergency neurologist in Sioux Falls, Dr. Asfora he would help her in an emergency situation (if her shunt failed) should one arise.

By looking at her picture above you can see, Daphnee's amazing personality pervails! Jonah says it best "Mommy I just love Daphnee". She gives us great joy with her laughter and smiles and she has taught us some of life's greatest lessons. We are poorer financially, but so much richer in Christ, relationships and family. We wouldn't change the hand we have been dealt.
My verse from scripture today says... "The Lord will guide you always; he will satisfy your needs in a sun-scorched land...You will be like a well-watered garden, like a spring whose waters never fail." Isaiah 58:11
He always provides!
In His hands,
Melissa

viruses, viruses, viruses!

2010-03-30T19:05:00.000-07:00

I'm not talking about Daphnee, when I title this one, instead my computer! When I returned home from Phoenix my computer was infected with 260 Trojan viruses! I finally got some help from the ol' Geek Squad and now I'm able to use my computer normally!

I have heard from a number of you during this time and how you feel I've been writing a book that you have been intently reading, but I have forgotten the last chapter...sorry to leave you hanging so long :)

As far as Daphnee, she is making some wonderful progress verbally, she makes more sounds than prior to surgery, Da, da, ba, ba, ga, ga, etc. We give great praise for her ability to now express verbally. She is also much more SPICEY! I told Dr. Adelson, he took a little too much sugar from Daphnee and left too much spice, but he said, she is probably just able to communicate her desires better-we all AGREE! She continues to have a great personality, with many smiles, squeals and laughter. We are all so happy to be home and together!

Yesterday, we had a few follow-up appointments in Sioux Falls. Dr. Bunch our neurologist said all looks well in regards to her shunt.

Dr. Haft our orthopedic surgeon is encouraged by her feet, but has concerns with her legs and lack of crawling/walking. We are now going to be referred to the Spina Bifida Clinic/Doctors in Sioux Falls. Sometime in May we will begin, yet another journey with Daphnee and more doctors. It was hard to leave Sioux Falls without great disappointment and an overwhelming feeling of exhaustion. Why more, why not a break?
But then I am reminded of the verse that has played such a great role in our lives this past year...Luke 9:23 "If anyone desires to come after me, let him deny himself, take up his cross daily, and follow me". I must say I do want to follow Jesus, I do want to do His will and I will persevere. Please pray for our next journey and what the Lord has in store for us. Let us be of encouragement to other families who face difficult journeys with their children. These children were God's plan-Psalm 139:15-16 "You were not a mistake, for all your days are written in my book. "I determined the exact time of your birth and where you would live." Acts 17:26

Our story will continue and I doubt this will be the last chapter. We hope you find encouragement through the journey God is taking us on, we pray you find strength in the verses we post and that you can use them when life challenges you.
In His hands,
Melissa

Fun in Phoenix

2010-03-18T19:08:00.001-07:00

A few days of down time in Phoenix, before heading home.

Over the weekend and before the doctors consent to return we took some time out and went to the Phoenix Zoo. Ronald McDonald House provided us with tickets gifted by the zoo for families who have children in the hospital. In addition to the zoo, we just picnicked in a park and played in my aunt and uncles yard. The temperature varied from 75 degrees-80. It was lovely! On Monday we went to 2 doctor appointments (where they hesitantly gave us consent to come home on Wednesday). They are hesitant because if something were to go wrong with Daphnee's shunt...we would need to hop on the helicopter and fly to Sioux Falls quickly. I guess it's a good thing we live 1 block from the helicopter landing pad in Britton. We also finished up a family interview via Fox News in Phoenix. They had been following our family story and wanted a piece when we were all together. This news story will air sometime in the next few weeks as a special project. We will do our best to send out the date for those interested in watching.

On Wednesday, we hopped on two different planes. The boys(all 3) were given tickets from Southwest, so our family could reunite, so they departed at 10:10 a.m. and the girls (all 3-grandma included) flew Delta departing at 11:38. We were all back together at 4:30 p.m. in Minneapolis, where we hopped into our truck and drove the 5 hour drive home. We are all exhausted and excited to be together and in our own home. We were cheerfully greeted with a sign, balloons and candy by our youth group-bless their hearts!

Today, Daphnee attempted to use her right hand by holding a rattle and shaking it. This is very exciting considering her entire left hemisphere is completely disconnected. We are no doubt an amazing creation!
Psalm 139:13-16
For you formed my inward parts; You covered me in my mother's womb, I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me.

It is amazing to think Daphnee was created this very way for His purpose. It has been hard at times, but it sure makes it easier knowing that she was purposely created this way, by Him, our Creator.
In His hands,
Melissa

In mommy's arms!

2010-03-14T09:20:00.000-07:00

Daphnee squealed and mommy cried...
After one month of living in Phoenix Children's Hospital rooms, Ronald McDonald House...this feels like a glimpse of home!
What a great feeling to have my little boys run into my arms with joy, hugs and kisses!

"And I want to show you great and marvelous things." Jeremiah 33:3
"If you seek me with all your heart, you will find me." Deuteronomy 4:29

Don't miss out on what glorious things the Lord wants to show you today...He is our Almighty Creator, Protector and Provider!

We are headed to Scottsdale Bible Church, where many people have been praying for our family. This church houses approximately 2,000 people/service! (around 6,000 attenders)It is an awesome experience and the pastors are sincere believers who fear God and not the world!

May you find yourself in a place today where you can learn more about YOUR Creator!
In His hands,
Melissa

With JOY in our hearts!

2010-03-13T09:12:00.000-08:00

(Picture: Daphnee at therapy)

More changes have occurred: We were "EVICTED" again :) But this time to the Ronald McDonald House. They felt we needed to get to a more "normal" environment and begin to establish routines for sleep and healing-YAHOO! Mommy needed this move as much or more than Daphnee...I could barely function anymore, due to so many night interruptions (roommates moving in and out during the night, they woke Daphnee every 2 hrs for vitals, they needed to weigh her after midnight?-I never understood this one, and so on)

My favorite change is that our family is going to reunite tonight! I haven't seen my boys since February 15, I can't even begin to think about how it will feel to hold them in my arms again.

We will stay together in the Ronald McDonald House, my aunt and uncle are gone, so they left us a car to use so we can leave the campus during the day and take a break from the hospital. Thank you for your prayers and great support to our family during the last month! What a joy it will be this evening to come together!

Monday morning we have 2 doctor appointments to learn about what happens next? How much longer will Daphnee and I need to stay for follow up and when do we book our flight HOME!

Today there is hope and joy in my soul, I am so excited for the change of pace, I look forward to seeing so many of you who have been great prayer warriors for us.

"For I am your provider and I meet all your needs." Matthew 6 :31-33

"My plan for your future has always been filled with hope." Jeremiah 29:11

"Because I love you with an everlasting love." Jeremiah 31:3

Praying you all feel His love today and that you will experience the joy we have, because He provides for us even in the darkest of hours...when we are so tired, out of control...and to be honest that is when He gets our attention the best-when we are weak!

In His hands,

Melissa

New Pace less time for blogging

2010-03-11T19:13:00.000-08:00

I don't know where the time goes, now that we are in a "regular" room/closet :).

(picture: Grandma Broberg finally gets to hold Daphnee!)

Daphnee is awake much more and has more needs that need to be met by me. We have a lot less nurse time...so back to all the diaper changes, even at night (I was liking that break as a night shift mom).

Today Daphnee had physical therapy, occupational therapy and she slept through speech therapy(I guess she had had enough for one day). She also got fitted for another pair of shoes to help her with her club feet, they will give her more stability as she begins to stand.

The rumor is that we will move off this floor and into the Ronald McDonald House on Saturday, but I haven't heard this from Dr. Adelson yet. He is still out of town and makes the final decision about Daphnee.

Daphnee is doing absolutely great; she is babbling like crazy, moving both legs equally with the same energy and waving bye, bye to everyone who stops in (I think she's ready to make a move out too-ha!)

Today was a beautiful day in Phoenix and I had the chance to sit outside...well it started as sitting, but eventually ended up horizontal I feel asleep on the playground bench at the hospital (obviously a little short on sleep) hopefully I wasn't drooling too badly-ha!

Daphnee is sleeping better in our new room, if I am with her, so into a twin bed we go. It's 8:30 she's asleep and I'm not far off.

Yesterday was a hard day for me, due to pure exhaustion, but I was sent this verse and it was a great reminder of what truly is important, even when life is out of control and so uncertain..."Therefore do not lose heart, Though outwardly we are wasting away, but inwardly we are being renewed day by day.For our light and momentary troubles are achieving for us an eternal glory that outweighs them all. So we can fix our eyes not on what is seen, but what is unseen. For what is seen is temporary and what is unseen is eternal." 2 Corinthians 4: 16-18

I remind myself the daily trials are just temporary and I am ever so grateful!

I need to sign off, Daphnee's fluid in her head is building a little and causing discomfort, please pray for her shunt to continue to work...I don't want things to regress!

In His hands,

Melissa

On your mark, get set...GO!

2010-03-10T18:58:00.000-08:00

WOW! Today major changes took place. We were off to CT at 7 a.m., off to X-Ray at 8:00 a.m., the Scan and X-Ray all confirmed that the shunt was successful and working well.

At 11:00 Dr. Adelson's nurse told us we would stay one more night in ICU. However, at noon we were told get ready we are going to rehab (what does that mean?). We had 10 minutes to pack up one month's worth of junk collected in my room, including art work on the walls! On your mark, get set...GO and off to a regular floor we went...Daphnee's bed piled high with all kinds of stuff (including Daphnee) and 11 balloons waving down the hall! At 8:00 p.m. I was still rattled! Our new room was 1/4 the size with a roommate included, no window and 8" around the bed for walking space-argh! Tonight at 8:30 our roommate has been discharged, so we breath for awhile, until a new roommate arrives. Who would have known I would desire my old ICU room (well just for a moment...We are stepping in the right direction and give great thanks)!

Sorry to those of you waiting for an update...I just needed to take a BIG breath and regroup. My condo was removed and I need to adjust to my telephone booth :)

Daphnee is making remarkable come backs! We have truly been blessed with a miracle. She is responding to commands, laughing, squealing, and loving life. We know this was the right decision, even though it's been a difficult journey.

Tonight I hope to find rest in this cozy place and maybe tomorrow I'll update sooner :)

Pray for news on when I can return home... I miss my family! or that someway we will find the right time to bring the boys here. The boys cannot visit us in the hospital, because they are under the age of 12. I need to be at the Ronald McDonald House, before they can come.

In His hands,

Melissa

Surgery over

2010-03-09T16:01:00.000-08:00

Daphnee is out of surgery. She had great pain upon her return. However, at this moment she found peace,comfort and sleep. Thank you for your prayers. We will need them throughout the night. They wake her every hour for 4 hours, then every 2 hours for 6 hours and then every 4 hours after that. She is very upset each time they wake her. Please pray for our night and that the shunt will be a success for Daphnee. If the shunt works for Daphnee, then we will be able to talk about our return home!

I chose you when I planned creation. Ephesians 1:11-12
You were not a mistake, for all your days are written in my book. Psalm 139:15-16
I determined the exact time of your birth and where you would live. Acts 17:26
We are so glad to be a part of God's plan for Daphnee's life. We are so grateful for all of you, who have wrapped their arms around us in this difficult journey. But we find our greatest joy, knowing God had planned everything thus far!

Thank you for your prayers, words of encouragement (e-mails, postings to the blog, mail, etc.) It is so awesome to hear from all of you, I love reading what God has placed on your heart for us each day. Keep them coming!
In His hands,
Melissa
p.s. Sorry I don't respond or send thank yous as promptly as I maybe should, but I am so ever grateful for all of you!

Tea Party

2010-03-09T12:36:00.000-08:00

This morning at 3;00 a.m. Daphnee decided to start babbling again, squealing and laughing. It was awesome! We laughed and played! However, at 5:00 a.m. I fed her the last bottle of formula, prior to surgery and told her the "Tea Party" was over...mommy needs rest!

Around 7 a.m. she cried for more formula, so I joined her in bed and we feel asleep until 10:00 a.m.! I couldn't believe we slept so long. (obviously we needed rest!)

Prayer Request: At this very moment Daphnee is in surgery, having a shunt put in to relieve the pressure. The fluid from her brain will now go through an internal drain, rather than an external drain. Please pray for a successful surgery and that the shunt will be tolerated, since this will have a pressure valve set at 7 (higher pressure than the tolerable 5). I also ask for prayer that her high protein levels will not cause the shunt to clog/fail. This would result in an emergency redo-(re program the shunt at a lower level or replace?) Last, but not least this surgeon is new to us, so please pray for him and his team and that the Lord would guide them through this process.

Sorry to end on this note, but our lil Walter went to be with his eternal Father in Heaven yesterday. Now your prayers can go to his parents and big brother (2.5 years old) for comfort in this great loss.

I really want to move out of this pod and go to a regular floor. There is so much sadness here.

"I lift my eyes up to the hills, where does my help come from? My help comes from the Lord, the maker of heaven and earth..."Psalm 121

In His hands,

Melissa

Exhausted but Grateful

2010-03-08T18:40:00.000-08:00

So how does this title fit together...well we had one of the most exhausting, frustrating days thus far. Not only did we have little sleep the last few days, our surgeon left town, the pressure was turned up on Daphnee's drain, we prepare for surgery tomorrow and I had to put my foot down and take matters into my own hands (yeah, yeah...some of you wonder what's so shocking about this- lol) nonetheless this day has been interesting.
Daphnee's surgeon stopped in this morning to introduce us to our new surgeon for the week, since he will be out of town. We are scheduled for a shunt surgery tomorrow at NOON. We are grateful for this, since her body is still unable to absorb the fluid, this will essentially be a bypass for the fluid, it will drain into her stomach.
This afternoon her ability to withstand the increased pressure on her head was not being tolerated well. Her heart surpassed 200- 5 different times, with horrible screaming and dumping fluid from her drain at an unacceptable rate (She released fluid acceptable at 2hrs in 10-30 seconds). Things were not working out, finally I did what our surgeon had told me to do, if things didn't go well. I contacted him (out of town), Lets just say Daphnee found relief, thanks to our wonderful, caring surgeon...who cares so much to willing leave his number and told me not to hesitate.
So we close our day exhausted from the stress, but are ever so grateful for our surgeon who cares for Daphnee to help her even when he is out of town!
I have a song that is my inspiration for today, tomorrow and has been since Daphnee started having seizures. I encourage you to listen to it, to know where our strength comes from!
www.myspace.com/joshwilson
Choose the song "Before the Morning" it has touched my life and reminds me why I have to feel the things that hurt me, why we have to go through these tough times! There is a greater Joy coming!
In His hands,
Melissa

In the "Mourning"

2010-03-07T21:26:00.000-08:00

This morning at 4 a.m. the room next to us lost their child. It was an indescribable sound to hear a mother mourning the loss of her child. The pain coming from her heart was sickening to hear, I wanted to run to her and tell her everything would be ok, but seeing their young child laying lifeless just a room down from ours is hard to swallow. I crawled in bed with Daphnee and gave praise for our little girl and the journey she has taken us on. I prayed for the family as they mourned their great loss. It was a rough morning for the staff and it had been a long day as they sensed this hour was nearing.

The pod we essentially live in is the trauma pod, there are 2 other pods: cardiac and the "Dirty"contagious illnesses, such as RSV. Everyday there are losses, but this is the first we have witnessed. It is hard to explain the difficulties families are faced with here.

You see parents pushing their children in wheel chairs (a child without any hair, thin and without expression) into radiation rooms for treatment. You see parents wearing masks and plastic gowns, because their child is so vulnerable to infection and you see parents wearing dark sunglasses with tears running down their cheeks. This place is one of rare celebration.

This place can become a daily grind or as I call it "Ground Hogs Day" with Bill Murray movie. I find I am losing track of the day, date and hour. I can't remember details...it's crazy, so this blog helps me to keep sane! It helps me log the events and focus on the most important events.

How can death be a focal point...well it's inevitable and God promises "I'll take away all the pain you have suffered on this earth". Revelation 21:3-4

Jesus died so that you and I could be reconciled. 2 Corinthians 5:18-19

His death was the ultimate expression of God's love for you. 1 John 4:10

If you receive the gift of my son Jesus, you receive me. 1 John 2:23

Will you be His child? John 1:12-13

For people who don't know the Lord...I don't know how they find comfort after the death of a child/loved one. I know I wouldn't be surviving what I am going through daily without knowing how God provides for me and my family. I'm so thankful for His guidance as I walk down His path for my life. I hope to serve Him with joy and to glorify Him in this difficult journey.

One last note: Would you pray for Walter; he is a little boy, 6 months of age, fighting Leukemia. I have gotten to know his family as they too live in our pod and some nights we eat dinner together. His parents are at a crossroad and need your prayers to guide them and give them strength during this difficult time. When you pray for Daphnee, don't forget lil Walter.

In His hands,

Melissa

Rain

2010-03-06T06:35:00.000-08:00

For those of us up north today the weather says cloudy with chances of freezing rain. The thing about Phoenix that impressed me most was how green it was. I mentioned to Tim and Tammy, Melissa's uncle and aunt, that I was surprized at how green it was and they said that's because we have had so much rain. Sure enough, for the time I was there, it rained every few days. Several years ago I heard a farmer praying in the spring on a rainy Sunday morning, "Father thank you for the rain, for the rain brings life..." I have heard that in March the desert blooms. It blooms in March because in February it rains. Rain washes everything from the top down and nurishes from the bottom up. "The heavens declair the glory of God..." Psalm 19:1. One of the "heavens" scripture describes is our atmosphere (air, clouds and rain). Just like rain cleans and nurishes trials have the same effect on our lives. They are difficult and uncomfortable to endure but they clean and nurish our lives. As we endure the rain we look forward to the green and to the bloom. Thanks for praying and keep it up!

More time

2010-03-05T18:33:00.000-08:00

After today's MRI, we have learned...we can do nothing today, tomorrow, Sunday, Monday. Daphnee's proteins are too high to do a shunt, it would only clog and not be of any value. So we wait.

Dr. Adelson(our neurosurgeon)will be gone next week, so he is trying to line another neuro surgeon up to do a shunt if it becomes an option. I asked if he had any thoughts of my return home...he mentioned March 24? 25th? This is getting to be more than I personally can handle. I called my mom and cried. We are trying to figure out a way to fly the boys out here and when a good time might be? What works for Charlie and will it be more difficult to say good-bye if we don't all go home together?

This gives me great compassion for our troop families. They are separated from each other for many more months at a time and have repeated good-byes. What a commitment this is to us, to willingly serve us and to be separated for a year or more-whew, now that's perspective!

Daphnee had a better day, her happy feet returned from morning til early evening...then she started to have some discomfort, hopefully a little Tylenol and a good night's sleep will help.

According to the MRI her blood clot is beginning to dissolve, this is good news. It can take up to 2 months to completely dissolve, time will tell.

Today I had the opportunity to leave with my aunt and stop at Target to purchase a few things to mail to my boys and to purchase a much needed Starbucks Coffee...the nurses bring them for themselves often and set them in my window (their station) I tell them it's cruel and unusual punishment :)

Our family with the gracious assistance of another hospital family had the opportunity to Skype (talk with one-another via Internet and see each other!) This was a great experience, but difficult for Jonah after we said good-bye-he went to the kitchen and cried for Mommy. Pray for our boys, it is becoming evident the time is wearing on all of us, they are showing more stress and asking more often when mommy and Daphnee will come home. Mommy asks these same questions to the doctors :)

This is yet another day the Lord HAS made, rejoice and be glad in it! I'm trying to keep this promise...each day is planned by our creator. I have no idea why we are still here, why Daphnee's head doesn't absorb and why we can't go home, but the Lord knows. Daphnee is a celebrity here, the nurses all want her for their patient, so we are treated well! (picture shown-the day and night nurses are in a competition as to who can make the cutest bow for her hat!)

Supposedly Fox News is coming Monday to interview us and do a story on Daphnee-PRAY FOR MY WORDS TO GLORIFY CHRIST AND HIS PLAN!

Struggling

2010-03-04T21:24:00.000-08:00

Tonight I can't write much, I am struggling with the distance between Phoenix and Britton.
It's hard to talk to my boys, especially when they are sad or just struggling. Moses, had a rough evening and when we talked he asked "Mommy when will you and Daphnee come home?" I once again had to answer...well it's probably going to be 10 more days (Dr. Adelson thinks 2 more weeks), but 10 days is long enough for him to understand that it's not tomorrow.
I must admit there are times I just want to cry, but I'm afraid I won't be able to stop...so I take a deep breath and refocus. Wow, whoever knew this would be so long.

Daphnee gained 3 oz today, she is eating well. Dr. Adelson turned the pressure back up on her drain, but she did not tolerate it well, so they turned it back down. This is a sign that her body is not absorbing her fluids. Both Charlie and I know that a shunt is looking more probable, but like anything added to your body to help it function properly is not preferred...we pray for a miracle tonight.
Melissa

Hemispharectomy incision

2010-03-04T10:24:00.000-08:00

Well here are the results of our lil Punkins surgery.

The incision runs through her hair line, so she will someday be able to cover most of remaining mark. The incision runs up from the front of her ear to the top of her head and then down the middle-back for just a couple of inches. Yes, that is her drain coming out of her head- which leads me to our GREATEST PRAYER NEED: Pray that Daphnee's body will begin to absorb her own fluids and no longer need the drain. If her body does not absorb the fluids, they will need to put a shunt in either this weekend or early Monday morning, this will be a life long shunt (like a bypass) that goes from her head to her stomach.

We will know more in regards to this prayer request after our MRI is complete tomorrow (Friday).
Praises:
Daphnee is eating foods and drinking formula beautifully!
Daphnee and I slept great last night
Daphnee is showing emotion and even cried out LOUD!

During the past few days it has been a roller coaster of emotions for me and physical issues for Daphnee. We thank you for your prayers and words of encouragement. At times I find it's very difficult to pray, focus and read, however, today I was reminded...
"As a shepherd carries a lamb, I have carried you close to my heart." Isaiah 40:11
Praise the Lord for His daily gifts and His great patience with me, when I want to be in control and need to be reminded that HE is!

Quick update

2010-03-03T21:31:00.000-08:00

Just a quick post...I know some of you check first thing in the a.m. so hope this helps you know your prayers continue to be answered!

Daphnee is eating so much better, she is holding her own bottle and back on formula-What a great praise!

We had a fantastic nurse today, who watched Daphnee's drain like she was family...she checked and re-checked it often, making sure Daphnee was not under too much pressure. If her pressure increased, her tongue began to stick out and she whimpered in pain.

Daphnee will have another MRI on Friday to check on the fluid levels in her head to see if they are down and ready for the pressure to be increased or if she needs to have a shunt (like a bypass)...will know more in 2-3 days.

Prayer needs:

Daphnee's fluids need to start absorbing via her own body, not the drain.

Daphnee hasn't vocalized/babbled since Friday, we have concerns with her having had too much pressure that more damage didn't take place, but the doctor assures us her MRI would've shown this.

Mom needs rest- I tried to take a nap today, while Grandma watched Daphnee, but a horrible headache, wouldn't let me relax.

(picture-Daphnee finds great stimulation from the dogs. I think we should keep a dog in our room. We are on the therapy list to be seen daily, because of Daphnee's positive response after a visit.)

goodnight

In His hands,

Melissa

A New Day

2010-03-03T07:37:00.000-08:00

To look back on yesterday and know that God granted me the prayers I needed is such a joy! Thank you to all who sent prayers yesterday. It was a day of riding the super roller coaster of ups and downs! By evening Daphnee made nice gains, she started to have success with eating at 11pm, she had to have a new IV put in at midnight, so she ate again. Fire alarms went off at 3:30, so we took advantage of this time and ate again! All formula is staying down without medication! Around 7 a.m. her tongue started to stick out again, so I called the nurse, they altered the drain and she improved! Wow-her tongue is my pressure reader(much more accurate then their monitor-ha, ha).

It sounds like we will stay in the PICU through the weekend: pediatric intensive care unit.

Today we have a special guest staying with us...Grandma Broberg (Karen-Charlie's mom).

She flew in last night and will be staying with us until next Wednesday. It is a blessing to have 2 adults, it makes life so much easier and provides more time for relaxed showers, potty breaks, naps and washing laundry :) I am very thankful she has joined us!

(picture above-one of our latest visitors who brought icecream and hot coco, mom was really wishing for COFFEE :)

After all that happened yesterday this verse seems perfect for yesterday, TODAY and tomorrow!

"For I am your provider and I meet all your needs." Matthew 6:31-33

Answered Prayer

2010-03-02T16:43:00.000-08:00

Good Evening,

It is 6:45 pm and we finally have relief. Daphnee's MRI showed that the fluid in her head was not being absorbed as it should be. Instead causing pressure to her head resulting in a lethargic, nauseated and vomiting baby. They re-opened the drain and 83 ml flowed out in 2.5 hours-quite a bit. (sorry for those of you, who may now be nauseated :) Our neurosurgeon stopped by and said, good and not good. It is good she has improved rapidly, but not good, because her body is not absorbing the fluid as it needs to. She will continue to be monitored through Friday when another MRI scan will take place.

I am grateful for Daphnee's return-kicking feet, reaching for me and enjoying her pacifier (None of which took place earlier today), however, this is a set back. Today we were scheduled to have the gauze and drain removed, neither will happen until Fri. or sometime this weekend?

I thank you for your prayers during this difficult time. I praise the Lord for His provisions-my aunt Tammy and new found friend Laura joined me this afternoon-t0 be a much needed distraction.

We ask for prayer

2010-03-02T10:09:00.000-08:00

Good Morning,
Today has taken a turn for more challenges...Daphnee continues to vomit whatever she eats, which is .5oz of pedialite at best. Her mouth and tongue do not look normal and she is drooling, not a norm for Daphnee. They are concerned about the pressure levels on Daphnee's lil head and plan to do an MRI sometime today. Charlie and I are both struggling emotionally today and need your prayers. Not only the stress, but the level of exhaustion is creeping upon us.
On a lighter note:
I give praise for some amazing things taking place here...Yesterday the doctor from our ICU unit stopped by and we soon learned he had worked at Daphnee's orphanage following the earthquake! He knows God's Littlest Angels and the director Dixie! Today he prayed for Daphnee and me. What a blessing it is to have a believer for a doctor. Wow, God continues to show me how BIG He is! This is the day the Lord has made, rejoice and be glad in it!
"My thoughts toward you are countless as the sand on the seashore." Psalms 139:17-18
What an awesome verse to focus on today!
In His hands,
Melissa

At Last

2010-03-01T13:27:00.001-08:00

6 days after surgery Daphnee can tolerate being held without great pain. She has no fever today, but is NPO (none per oral), she is not allowed to eat orally. Yesterday she became very nauseated due to the pressure on her brain and vomited everything she ate, besides having loose stools from the antibiotics. She is now on IV fluid to maintain hydration. If she is not able to tolerate bottle fluids by tomorrow they are going to begin tubal feedings- please pray that the pressure on her brain is eliminated, allowing for her nausea to go away and regular eating to begin!
She sleeps often, but enjoys her doggy visitors...they are very stimulating for her. She is charted as "Happy Feet" by the dog therapy volunteers (her feet start kicking and reaching out to touch the dogs on her bed...as soon as they jump up!)

My aunt and uncle have been so good to me...meals, visits, and evening breaks. I am so grateful for their sacrifice to change up their routines, daily life and work schedules.
On the home front Charlie and the boys are receiving the same kind of love! Our church family and friends have lined up meals, offered to do laundry, care for the boys, etc. It is so humbling to receive the love and kindness people are offering-We Praise the Lord for each one of you and your generous gifts and services!
He provides every day, every hour..."I am able to do more for you than you could possibly imagine." Ephesians 3:20
In His Hands,
Melissa

Routine Changes

2010-02-28T06:39:00.001-08:00

Today the routines have changed. Daddy left to go home yesterday and now it's Daphnee and me at the mercy of the nurses. A shower is not looking to promising today or at least not this a.m., even getting to the restroom has been difficult! At this very moment I want to say...Wo is Me, but I am trying hard to find this as yet another adventure...grimy teeth, greasy hair and a full bladder, could get interesting-ha!

Yesterday Charlie left at 10:30 a.m, the free ticket did not happen, since the airlines did not need his seat. But this allowed him to join our boys sooner and they were excited to see him!

Daphnee continues to run a fever through the day. She has diarrhea and She threw up her milk this morning, not only unpleasant, but painful since her head is in so much pain. Please pray that the fever will break and not return! Her swelling continues to improve, today we see both brown eyes perfectly!

Daphnee continues to maintain her pleasant personality, but really needs your prayers to turn a corner, she looks wiped out today.

I thank God for the very growth He has allowed me during this difficult time... today I leave you with Luke 13:6-9

We are to be mature trees that the Lord delights in, rather than ones uprooted for their lack of fruit. We should not resist the very thing God sends to mature us.

The Ultimate Provider

2010-02-27T10:38:00.000-08:00

Wow, I expected today, to be a sad, difficult day...but the Lord has provided entertainment, Starbucks coffee, lunch, visits, mail, pictures via texts, craft supplies to make Daphnee's room less sterile, a visit from a doggy (a volunteer program that Daphnee loves!) inspirational Christian music via internet and possibly a free airline ticket if Charlie takes an alterative flight home today (He's on the waiting list as I write). I feel so blessed and God knew all this would take place as I worried about how this day would go.

"I know when you sit down and when you rise up." Psalm 139:2

"And it is my desire to lavish my love on you." 1 John 3:1

Blessed by our creator once again, over and over I praise Him for His hand in this situation.

May each one of you who reads this blog...experience His love for you today, as our family has!

In His hands,

Melissa

Long Day

2010-02-26T17:23:00.000-08:00

Daphnee continues to fight a fever. They gave her a blood transfusion around 11:00 am and then she looked great around 2 pm, but now she is not feeling well again. We also saw some odd movements/flinches this afternoon and are praying they are not seizures. The doctors have been in to see her and just told us it could be... her body working through the change in anti-seizure medicine, an irritation from the surgery, or a sleep phenomena. We ask for your prayers during the ups and downs of Daphnee fighting her way through this yucky stuff.

She is in pain and dislikes diaper changes, as they put pressure on her head. I tried to hold her today, but the pain for her was too great. If she coughs/sneezes she cries from the pain. They told us her head will be experiencing a terrible headache, more than we can imagine. We keep the lights off and the sounds low.

A glimer of light for Charlie and I today...my aunt Tammy came to watch Daphnee, so we could have a lunch date before he leaves to go home tomorrow. We are grateful to have family nearby, we realize why our Sioux Falls neurologist wanted us to choose a place near family.

Charlie heads for home Saturday at 12:30 (flight) please pray for his travel. He is excited to see the boys and hopes they are not disappointed that we are not all returning.

GOOD NEWS:

As of 9:00pm she has taken a positive turn! Both eyes have opened, she is kicking her legs around, playing with toys and she SMILED :) she hasn't smiled since the day before surgery.

Giving God Great Praise for His constant hand in this situation!

Too Warm

2010-02-26T09:00:00.000-08:00

Too Warm! And we're not talking Phoenix...

Not feeling good today:( Daphnee has a fever and it won't give up. They say that it is from blood in her cerebral spinal fluid (fluid that flows on the inside and outside of our brain and spinal cord). She has also been having more pain. She has only been on Tylenol for pain and fever since yesterday until giving her a bit of morphine this morning. They are considering giving her more blood and doing a CT scan or another MRI to evaluate the epidural hematoma she had after the surgery. The epidural hematoma (blood clot between the skull and brain covering) is typical but sometimes they don't stop bleeding and can cause touble too. Pray that the doctors can make the right decision and that Daphnee will start feeling better soon.

Intimate Moments

2010-02-25T17:55:00.000-08:00

We have received some intimate moments with Daphnee; prior to surgery Daphnee disliked being kissed and would push us away. As of yesterday...she KISSES BACK, this is just one example of being able to respond appropriately without having the seizures confuse her.

Since I can't hold her, due to the drain in her head and the need to stay at a particular incline, we get to sleep together so we can snuggle.
I woke up this a.m. with Daphnee looking at me with her one open eye and she was sucking on my sweatshirt string...she had turned to see me!
Daphnee has lost all of her right sided peripheral vision, due to surgery, so she has to turn to see us on her right side.
Tonight Daddy gets to be intimate with Daphnee and snuggle away all night:)

When Charlie goes home on Saturday life around here will change. Someone has to stay with Daphnee all the time so life will be interesting. Please pray for rest, strength, a shower (daily:), and entertainment-ha! I don't sit still very well!!

Daphnee had another good day. She is able to hold her tiny bottles one-handed, by herself. She got rid of another tube and the surgeon said her fever is due to her surgery..."It's too early for it to be an infection"...his words.

We give praise to our heavenly Father for his daily blessings and continued healing upon Daphnee!

Go Arizona State!

2010-02-25T07:56:00.000-08:00

Seems to us we may as well start cheering the local university teams on since we feel like we are becoming citizens. Yesterday our surgeon told us that Daphnee and I will definitely still be here on March 9th and possibly longer. Daphnee is doing well, but he wants to be on the safe side, since we live 5 hours from a neuro-surgeon.

Daphnee is running a fever today, so they are checking for an infection. It is common to have a fever after a big surgery, however, need to know there's no infection for sure. Daphnee's face is very swollen as expected after this type of surgery. She can barely open her right eye, her left eye is swollen shut! The drainage from her head continues to improve, so we praise the Lord for this improvement.

We have had some wonderful support here in Phoenix. My aunt brought us Chinese take out for lunch yesterday and a huge basket of snacks/magazines. In the evening new friends (Greg and Laura) stopped by to visit. Greg and Laura also have a child who has infantile spasms like Daphnee. We meet Greg when his church group served us supper at the Ronald McDonald House. They are awsome and we have had a great time getting to know them. They brought Daphnee a movie and an ASU t-shirt and more yummy snacks/magazines!

We thank all of you who send us postings, e-mails, etc. in our long stay here, it helps us to keep going!

Grandpa and Grandma, Moses and Jonah: Thank you for the balloons and pink flamingo-I miss you and love you. Daphnee

Dr. Gerrard

2010-02-24T10:04:00.000-08:00

This morning we met the neurologist who monitored Daphnee's EEG during surgery. Her name is Dr. Gerrard. She was very encouraging. She said that after the surgery Daphnee's EEG improved by 70% and that the EEG will likely continue to improve. She said confidently that we will see significant improvements in Daphnee's development. She also said that she figured the neuroplasticity (nerve rerouting) likely happened after the stroke/before the surgery so we might not notice any significant increase in right sided weakness. She was very encouraged by the surgery and how Daphnee looks now. Daphnee has had no seizures since the surgery. It's not much time but by now she typically would have had dozens. This morning Dr. Buchhalter, Daphnee's epileptologist, said that if Daphnee has no seizures in the first week she has a 50% chance of never having a seizure again. It's been a good news day so far. Thanks for praying and keep it up!

2010-02-24T06:51:00.000-08:00

This morning Daphnee is sleeping peacefully. She is breathing on her own and sucking on her pacifier. She woke up to greet me when I came in. She can open her eyes but they are still very swollen. She was talking a little. She has not been upset or in pain since late yesterday afternoon. The doctors and nurses are doing a great job. We visited with Dr. Adelson, the surgeon, last night and he asked if she could move her left side. He was concerned about a specific point in the surgery where things can go wrong without them knowing it. We told him that she has been moving her left side fine and her right side too. He said, "God is such a joker." When you disconnect the left side of the brain the right side of the body should not work. He said, "the older I get the more humble I become." Dr. Adelson is easy to like. They call what is happening neuroplasticity. The right side of the brain will take over for what the left can no longer do. Daphnee is rerouting her nervous system. This is difficult or impossible for anyone to explain. We are fearfully and wonderfully made! Thanks for praying.

At Last...

2010-02-23T18:27:00.000-08:00

At Last we write...
At Last surgery has ended (we left her at 7:20 and saw her again a little after 3pm)
At Last we have visited with the surgeon and doctors.
In 10 minutes Daphnee will return to her ICU room after having one more MRI.
At Last Charlie and I have had a meal.
It has been one exhausting, roller coaster day. Surgery went very well. She had very little blood loss and did great during surgery-Thank you for your constant prayers!

This evening she struggled with waking up in pain, which caused a tremor effect and high blood pressure 200/100. She was given pain medicine-which helped quickly.
Dr. Adelson explained that he did a functional hemispharectomy- He removed her temporal lobe and disconnected the entire left hemisphere. We are not able to see her very well, as she is covered with many tubes and gauze. But we can touch her and talk to her and of course kiss her little nose. Her face is very swollen.

I do not get to hold her, due to all the hook ups and fragile state she is in. Tomorrow should allow for my arms to be filled...At Last!

"You are fearfully and wonderfully made. "Psalm 139:13
God continuously blesses us and provides for our family. We thank you for all your prayers and postings. We are encouraged by your words and prayers.

Hurry Up and Wait

2010-02-23T06:34:00.000-08:00

Our morning started out good, until we arrived at the hospital...they had no record of us in admitting and no record of Daphnee having surgery-wow! They told us we may have to wait until 8 a.m. when the offices opened up...it was 5:30 a.m.!

Praise the Lord Dr. Adelson's nurse practitioner walked through the waiting room around 6:15 a.m. and asked why we were still there- she took control of the situation and things rolled.

Daphnee was prepped and admitted quickly and left for surgery at 7:25. Now we wait...for maybe 6-8 hours. The last surgery they did like this took 2 days of 6 hrs each. We pray we have one day. As you go through your day would you remember to pray for Daphnee to have little blood loss, strong vitals and recover beautifully. Also for her parents to find peace and maybe a little sunshine. We want to glorify Christ with this difficult time! Blessed be His name.

Brobergs

Surgery details

2010-02-22T20:55:00.000-08:00

Daphnee will check into the hospital at 5:30 tomorrow morning. Surgery is scheduled to start at 6:30. She will have a functional hemispherectomy/hemispherotomy. She had a stroke on the left side of her brain that is likely causing most or all of her seizures. In this surgery they will disconnect the left side of her brain or specifically her left cerebral hemisphere so that any seizure activity will essentially be trapped. She will not be aware of the left cerebral hemisphere any longer and it will no longer have any use. If the seizures are only originating from the left side of her brain and the surgery goes as planned the seizures will be done. It is the thought of the doctors that Daphnee's stroke was caused by meningitis which then leaves potential that the right side of her brain could be causing seizures too. So the line they like to use is, "we think the surgery will significantly improve her life". They don't make any promises. They also expect her to remain on antiepileptic medication for a time even if she no longer has seizures. As many of you know she does not have full use of her right side. After the surgery this could be worse for a while but typically returns back to baseline and occasionally improves over time. She will lose her right peripheral visual field but not her central vision. The surgeon assured us that she will not lose her personality. If all goes well kids like Daphnee typically start develop at a more normal pace. Thank you for praying.

Team of Doctors

2010-02-22T12:33:00.000-08:00

This morning at 7:30 we were allowed to join Daphnee's team of doctors, nurses and other staff in a meeting to discuss the plan/ procedure for Daphnee tomorrow. We watched her EEG's aligned with a video of seizures, we viewed her MRI in active video and heard the doctors discuss Daphnee's history and future.

Beginning tomorrow between the hours of 5:30 a.m. and 6 a.m. Daphnee will be admitted for surgery, she will begin anesthesiology around 6:30 and surgery at approximately 7:30. The surgery should last 3 hours or so. Charlie will have to post the details of the surgery, since he is more familiar with the procedure than I am.

We ask for prayer that Daphnee will lose very little blood during her surgery, that she will recover quickly, that there will NOT be a need for a shunt (hydrocephalus) and the obvious that her seizures will be eliminated! Dr. Adelson (Daphnee's surgeon) is often referred to as the "Big Guns" since he is considered one of the top dogs in the country for this procedure- we pray that God will guide him every step of the way.

Tonight we will join my aunt and uncle for supper and to be distracted from tomorrow's events!

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Thank you for your support and much needed prayers,

Brobergs

Perspective

2010-02-21T20:15:00.000-08:00

It's hard to describe what it feels like to watch your sweet innocent little baby wretch from seizures dozens of times every day. It's hard to share how it feels when she whimpers because of discomfort and confusion. It's hard to watch her development trail behind her peers. It's hard to watch your child suffer. Today we met some new people at the Ronald McDonald house in Phoenix. One family has a little boy who underwent chemotherapy and a bone marrow transplant. He has been at Phoenix Children's for two months and in intensive care for over a month. There was a church group who served us supper tonight. We sat and talked with some people from the group. One of the guys, who was serving, was about our age and has a son with Down's Syndrome, is blind and has infantile spasms too. Admittedly there are times I feel sorry for myself but mostly I feel sorry for Daphnee. And then there are times when, considering my own trials, I feel fortunate because I hear of other's struggles. The Bible tells us that there will be a day where there is no more infantile spasms, chemotherapy, Down's or blindness. There will be a day where there is no more suffering. I long for that day.
Tomorrow we will go to a physicians meeting and learn the plans they have for Daphnee. We look forward to hearing their plans. Daphee is scheduled for surgery on Tuesday. Please pray for Daphnee and her doctors. We know that God has THE plan for Daphnee and we trust that it is right.

Big Brothers

2010-02-20T20:34:00.000-08:00

While we spend time in Phoenix our two little boys spend time with Grandpa and Grandma. Today when they called Jonah said, "Mommy I need you to come here now..." Then he laid down on grandma's kitchen floor and began to cry...we need your prayers for this time to go quickly and to give us peace while we are seperated. This mommy can't have too many calls like this and continue to be strong for what is yet to come in the days ahead.
Jonah and Moses love being at Grandpa and Grandmas, but the time of seperation is longer than usual and it will be at least 10-13 days more, provided all goes as planned. Please pray for our family.

Discharged

2010-02-20T08:01:00.000-08:00

We're out for the weekend! The MRI on Thurday ran so late that they couldn't finish OT, PT and speech evaluations so we ended up spending another night in the hospital to finish on Friday. Daphnee had an evaluation by a psychologist yesterday too. They do all of these evaluations pre and post surgery to see if there is any change in her development. We went to the zoo yesterday afternoon and enjoyed the sunshine. We had supper last night with Melissa's uncle Tim and his family. It was nice to relax and spend time with family and plan more time with them this weekend to see the local sights. The weather isn't supposed to be as nice this weekend but we'll take 65 and a chance of showers. We will be joining the physician meeting on Monday morning where they will discuss Daphnee's case and plan her surgery in detail. They don't typically have parents attend but Melissa asked if we could attend so it should be an interesting experience. Surgery is planned for 6:30 Tuesday morning. Melissa and Daphnee will have to stay for 7-10 days following the surgery. I will go home as soon as Dahnee is stabilized and on the mend.

(picture of grapefruit tree at Tim and Tammy's house)

A little sunshine

2010-02-18T13:02:00.000-08:00

There is a gap between the EEG, which ended today, and the MRI that we continue to wait for. It is difficult to wait for the next thing to happen but it's a lot easier when you can sit outside in the sun and the temperature is almost 80. Daphnee has been fasting since 9:30 and it is now just after 2:00. She is sleeping and we hope she continues until they show up for the MRI. After the MRI and some other evaluations this afternoon we will be discharged until Tuesday morning when we will check in for surgery. She will be evaluated by a phychologist tomorrow in an outpatient clinic. We look forward to a little more freedom this weekend. Time for an MRI. Things are going well.

Lights on and little sleep

2010-02-18T05:34:00.000-08:00

Have you ever heard of sleeping with the lights on? Since Daphnee's seizures are under constant monitoring via video, audio and EEG that is exactly how we had to sleep last night-with the lights on! Today I will definitely be looking for some coffee and a NAP! However, since we slept little and lightly, Daphnee had many seizures allowing for great EEG readings and video. This will help the doctors see exactly what they are looking for! She is scheduled for a 1 p.m. MRI today (Feb.18), so she has not been allowed anything to eat since 3 a.m., please pray for her to find sleep this morning, since she can not have anything more to eat. No sleep and No food could provide a very unhappy baby, but with your prayers she will prevail through this difficult time.
In His Hands,

Answered prayer

2010-02-17T10:24:00.000-08:00

Safe travel from Britton to Minneapolis in stormy weather, the smoothest flight I've ever been on, a good night of sleep last night, beautiful weather in Phoenix, a room at the Ronald MacDonald house on the hospital campus and a car to use while we're here are just a few answered prayers that come to mind as I write. We hope and pray for good EEG readings today(the goofy hat with a tail pictured) and a good MRI tomorrow.

We were welcomed by balloons, a happy birthday sign and gifts from the hospital when we checked into our room this morning. We have many caretakers who are VERY attentive. You know the button you push when you need a nurse? When we push that button you better not be standing by the door or you might get run over! (They pay special attention to kids that have seizures). Daphnee is well cared for.

While we met with Dr. Buchhalter, Daphnee's epilptologist, this morning Daphnee had a "good" cluster of seizures. The timing was perfect which helps the doctor get the information he's looking for right away. We will continue to monitor seizures today and tonight. Tomorrow Daphnee has an MRI. Dr. Buchhalter is clearly a very good doctor. I can see quickly why Daphnee's neurologist, Dr. Bunch, referred us here. We will have a meeting with Dr. Adelson, the neurosurgeon, and with Dr. Rajun, the physiatrist, today or tomorrow. Daphnee will also have an anesthesiologist, a neuroradiologist and maybe some other doctor's before we're done with this deal.

2010-02-17T09:19:00.000-08:00

Daphnee Celebrated her 1st Birthday on Valentine's Day.

Today Feb. 17, 2010 she spends her 1st Birthday in Phoenix Children's Hospital prayerfully seeking answers to what we do next to stop her seizures.

We praise the Lord for an amazing flight. Daphnee slept most of the way and squealed in delight during her awake time. Her smiles and squeals infected most of the plane. She attracts much attention with her beautiful eyes and great personality. Many people desire to more about her journey and we share, hoping we are fulfilling her purpose for being in our home.

Daphnee's first year

2010-02-11T19:30:00.000-08:00

Daphnee was born on Feb. 17, 2009 in Haiti. She had bilateral club feet and to the best of our knowledge that is why she was brought to God's Littlest Angel's (GLA) orphanage near Port Au Prince. We first met Daphnee in March of 2009 through a picture in the GLA newsletter. We were in contact with GLA through our adoption agency, Bethany Christian Services. We told our social worker that we were interested in Daphnee and after much prayer, reviewing pictures, video and medical information we decided that God had planned for Daphnee to be in our family. In April GLA made the official referral and started adoption proceedings. Because Daphnee had club feet we knew she would come to the US before the adoption was finalized on a medical visa. While we waited for the necessary visa paperwork, in June, Daphnee became very ill. We believe she had a serious infection that went septic or she had meningitis. Though no one knew at the time we believe, as a result of the serious infection, she had a stroke on the left side of her brain. She recovered quickly and was ready to travel to the US in July. On July 26 Daphnee came to the US with GLA's orphanage director. Even after several doctor visits no one recognized that Daphnee suffered from a stroke while in Haiti. In September we began a series of casts to correct her club feet. After weekly castings for about 8 weeks it was time for surgery at Sanford Children's Hospital to finish the correction to her feet. The surgery went well. The day after surgery as we were preparing to leave the hospital Daphnee began to have clusters of flinches. It didn't seem like much at first but as a few days passed the episodes of flinching persisted so we contacted the orthopedic surgeon's office. They suggested we see our pediatrician right away. We were able to see our pediatrician the next day and immediately she knew what was wrong. Our baby was having "infantile spasms". Two days later we once again checked Daphnee into Sanford Children's Hospital but this time to be evaluated for seizures. After and EEG and an MRI Dr. Bunch, Daphnee's neurologist, confirmed that she was having infantile spasms from a stroke. Infantile spams is a catastrophic form of epilepsy that affects kids most commonly between the ages of 6 months and 2 years. Kids like Daphnee can have hundreds of seizures every day. The seizures are brief, come in clusters and seem relatively benign. But unfortunately they are terribly destructive. The seizures rob cognitive function. If they are not stopped as quickly as possible the prognosis goes from bad to worse. Daphnee is delayed in her development but seems to be remarkably resilient, consistently gaining new skills, in the face of her many seizures. And for this we give all glory and credit to her Maker. We have tried two different medications and neither brought Daphnee's spasms to a halt. Since the medication is not working Dr. Bunch referred Daphnee to Phoenix Children's Hospital to be evaluated for hemispherectomy. Hemispherectomy is surgically disconnecting any part of the cerebral hemisphere (left in Daphnee's case) that is causing seizure activity. So on Feb. 17, 2010, (Daphnee's birthday) she will check into Phoenix Children's Hospital. If the doctors determine she is a candidate for surgery they will do it right away. This blog was created so that our friends and family can remain connected to what is happening over the next few weeks of Daphnee's life. Please keep Daphnee at the top of your prayer list. Thanks.

Daphnee Updates

2010-02-08T11:12:00.000-08:00

We will be posting daily updates on Daphnee once we arrive in Phoenix. We hope this can help you be in prayer for our lil punkin as she endures EEG's, MRI's and other evaluations. We also ask prayer for wisdom for the doctors and the decisions they will be making.

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jeus to all generations, forever and ever. Amen" Ephesians 3:20-21