better late than never…

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I’m not quite sure where time has gone… It’s been five crazy busy years since the last update with much to celebrate…coupled with a bit of sorrow.

Benjamin graduated in May 2014 from Stevenson University with his bachelors in Computer Information Systems.  We are so proud of him!

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Ben’s Graduation from Stevenson University ’14


He proposed to a lovely girl whom I am honored to have as another daughter.  Erin has already won the title “favorite daughter-in-law”!  They married in August of 2014 and what a beautiful couple they are!

Ben & Erin's Engangement Photo

They just celebrated their 3rd wedding anniversary!

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Ben & Erin’s Wedding ’14


Morgan graduated from high school June ’13 and it was indeed a day to celebrate!

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Morgan’s Graduation ’13


She married in September ’13.  Wayne is kind, gentle and possesses a desire to do what’s right.  They just celebrated their 4th wedding anniversary.

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Morgan & Wayne’s Wedding ’13


Hannah graduated from high school in 2013 and we captured the celebration perfectly!  LOL

Hannah's Graduation '13

Hannah’s High School Graduation ’14


She attended Johnson & Wales University in Charlotte, NC for two years graduating with her Associates in Applied Science Baking & Pastry. She returned to Johnson & Wales Colorado campus this fall to further her education. Miss her beyond words!

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Johnson & Wales University Graduation ~ Hannah & Gabriella ’16


Audrey turned 8, then 9…10…11…and is now 12!

She was homeschooled up until 6th grade and is now attending a classical school and is doing quite well! So very proud of her~she works diligently at getting her studies done.

Audrey is such a blessing to our family and Gabriella couldn’t asked for a better big sister.  She helps keep “watch” over Gabriella often if but only for a few minutes.

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Audrey 12th birthday ~ ’17


Gabriella experienced her record of 8 months with no seizures and it was glorious!  I am so thankful for that time and yet it seems so long ago… Then the day after the Ravens won the Super Bowl ’13 she had a breakthrough seizure that would be the start of continued seizures till this day…  We were averaging about 1 a month, then 1 every two weeks, 1 every week and at most 12 grand mals in a night.  Recouping from those nights takes a couple days as we remain in HIS grip… She’s grown quite a bit in the last 6 months and is about half my body weight. I’m working on getting stronger…We have been on one seizure med with just starting another along with Chrlotte’s Web – ROC. Seizures are shorter than they have ever been with a quick recovery~for that I am so grateful! God has indeed been a constant help in time of need… She was recently diagnosed with severe osteoporosis-her bone density test was a negative 6…(should be zero).  We are trying to be even more careful as we tip toe through this thing called life…resting again in HIS grip. Gabriella loves the simple things ~ shopping at Target:-) going to the park:-) reading the same books we’ve read for the last 5 years, lol 🙂 “friends” which includes anyone around her size even if you’re a stranger:-),  and eating at Chik-fil-A:-) She reminds me everyday what a precious gift life is and I’m so thankful for that gift!

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Gabriella’s 9th Birthday ~ ’17

The biggest news to date is I am a granny to not one, but three beautiful grand-littles!  They call me MiMi and it just melts my heart!

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My Grand-littles:-)

As I update this blog, the awareness of just how life is but a vapor is a reality… Oh how quickly time has passed!  What was once one home is now four…  We’ve had unions and separations and God has been there through it all…

He never blinked concerning us… Nothing caught Him off-guard…

Thankful to remain IN HIS GRIP!

Blessings to you!

 

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AMAZING God

It’s been a year and OH WHAT A DIFFERENCE GOD CAN MAKE IN A YEAR!

I hope this picture doesn’t bother you.  It is a reminder to us of God’s healing power still!  When we left the hospital last September Gabriella was not walking or talking, she was tube fed and was paralyzed on her left side…

God has done AMAZING things!

September 2011
Children’s Hospital of Philadelphia

Promises kept from the PICU

May 2012
Disney~Cinderella’s Happily Ever After Dinner

Waiting for Cinderella…

Princess Gabriella and Cinderella

One day Gabriella told us that Cinderella was her favorite color and she ALWAYS picks blue AND Cinderella.

“May I have this dance?”
Audrey and Prince Charming

Dancing with MICKEY at the Dance Party

and MINNIE too!

June 2012 Gabriella’s 4th Birthday
Getting ready to celebrate Audrey’s 7th and Gabriella’s 4th Birthdays with friends at Girly Girlz

and what a celebration it was!

Since Gabriella can’t have cake, we’ve tried to give her something special to do at birthdays.  She enjoys blowing out candles, so we buy candles for anyone’s birthday just to let her sing and blow them out.  At her party she decided to sing for every girl and let them blow out the candle:-)

HAPPY 4th BIRTHDAY GABRIELLA!
and no, it’s not a real cupcake, but a pin cushion:-) Notice the BLUE candle and necklace!  lol  She even picked out a BLUE tiara, BLUE polish, BLUE nail glitter and BLUE eye shadow!

July 3rd was not a good day here.  Her all time record of no seizures was broken and I cried one too many tears.  She had a fever over 103 even after Motrin, but we didn’t know till AFTER the seizure (nothing out of the norm for her).  We prepared to go to the hospital, but are thankful it stopped after prayer and one round of diastat.  The doctor’s office was closed on the 4th, so we took her the next day.  She had blistered in her throat and apparently caught what almost every other kid we knew had.  We have since been seizure free!  and we thank God Almighty for this seizure freedom!

Happy 16th Birthday Hannah!

Hannah turned 16 and we had a surprise party for her.  We even had a friend order cupcakes for us~so she made her own cupcakes:-)

Daisy
2003-2012

Our sweet Daisy died last Sunday after sneaking in the trash and choking on a hamburger:-(  It was a sad day, but we are thankful to have had her in our lives for the past 9 years.  Audrey said she never knew she had so many tears and Gabriella thinks she is still at the doctor…

Blessings to YOU!

Forever In HIS Grip

God is faithful…

Christmas was full of wonder and blessings!  We were able to go to Hershey Park, have our annual Christmas Eve Breakfast for family, and even send out a Christmas card or two.  Ben was home for over a month and momma was happy.  Gabriella was so funny this year about Santa~she wanted NOTHING to do with him.  The only one she had on her mind was MICKEY!  I had asked her if she wanted Santa to come to our house and she said, “I don’t want to see Santa!  I want to see Mickey!”  Well, we didn’t make it to Disney World for Christmas, but will be going soon to live out our “secret” from the hospital.

Mark had surgery on his shoulder 2 days after Christmas and has recovered well.  He still has pain, but knew the recovery would be a long one…however, it didn’t keep him from his annual golf trip last month.

Never a dull moment at the Roush House!

Morgan was complaining with some pains in her side and chest soon after Christmas.  After an ER visit, doctor visits, MRI, x-ray, sonogram and hida scan she had surgery late January to have her gallbladder removed AND HAS HEALED WONDERFULLY!

God is faithful in life no matter what!

We have been trying to get Gabriella’s blood drawn since early December.  After 5 failed trips to the lab, February 2nd was a good day:-)  The results were good except for her low Sodium Bicarbonate level which will be taken care of with a citric acid RX.

Gabriella’s progress in therapy has been amazing!  We are daily working on climbing stairs, yet more challenging for her is coming down.  There is an exercise her physical therapist has done with her for some time without success…  It involves her ability to “catch” herself when falling. January was our last visit, and SHE DID IT!  To God be the Glory!   I think she has made a full recovery and know the term miracle is most fitting.  She might not be where other 3 year olds are, but she’s not any other 3 year old~she’s our Gabriella Joy!

God is faithful in life no matter what!

We love the snow!  Hannah and her friend decided to slide down our front lawn on a sled STANDING!  Do I need to say they fell?  She heard a crack and was unable to get up right away…  She’s a tough cookie so we brushed it off after she walked in the house telling us about her adventure.  A couple days later she started complaining with weakness in both hands periodically.  She also had soreness in both arms in the same spot.  I took her for an x-ray and then to see a neuro-orthopedic.   He said her spine was abnormal, but not from the fall and he wasn’t worried.  He did tell her not to do stupid stuff anymore!  lol

God is faithful in life no matter what!

Audrey is enjoying her home school group Classical Conversations with weekly presentations. I missed the one Aunt Michelle said was her best yet!  She had to share a trip she wanted to take and what she would do there.   Paris won with the tour starting at the Eiffel Tower and ending at a cupcake shop with her sister Hannah!  She has finished her 1st year at Classical Conversations and can’t wait till next year!

Meal time is still quiet a challenge.  Yesterday Gabriella ran to the other room screaming “”I don’t like it!” when she saw me with her oil.  She did however find a pack of gum in Audrey’s purse and knew to ask, “Um Dad, is this mine?’  We have been able to go Chick-fil-A and are thrilled with the grilled nuggets!  Don’t know if they will be as popular for other families, but for a Keto kid they are AWESOME!  The goal of this diet was to help reduce seizures and it has indeed done that.  We are so thankful for this season!

God is faithful in life no matter what!

A few other events in the Roush House over the last 6 months…

  • the pool is finished
  • Hannah received Honors 1st, 2nd, & 3rd quarter
  • Morgan received Honors 1st & 3rd quarter
  • Ben’s car was hit in the parking lot at Stevenson University
  • I’ve been shopping a few times by myself with the lil ones:-)
  • iPhoto was somehow deleted off my computer with ALL my photos since Gabriella was born:-(
  • our sweet Audrey is 7!
  • got the garage cleaned out AGAIN! lol
  • Hermie, our hermit crab died~still have to bury him!!!!
  • Ben had saved my photos on an external hard drive and put them back on:-) and all of his girlfriend’s too!  lol
  • Morgan broke her arm the 2nd week of soccer practice, cast is off and she started playing again this week:-)

God is faithful in life no matter what!

Blessings to you all!

JOY

I don’t know where the time goes…

We have not had a seizure since I last posted (and I can’t even remember how long ago it’s been)~Thank You Lord.  We feel so blessed!

There was so much to be thankful for on Thanksgiving and everyday…

Aunt Ronda was so sweet to make the girls matching outfits AGAIN!  She knows how much I love that kind of thing and has come to my rescue so many times when it was impossible for me to get them made (she makes them better than me anyways).  Thank you my dear twin!

There has been so many things I wanted to blog about and now as I sit here after midnight I can’t remember…

Gabriella did get a hold of a brownie one evening.  We questioned her about where she got it from and she pointed to the exact place where Audrey said she had left hers.  I think she REALLY enjoyed it and said it was yummy:-)  We gave her about 12 grams of oil to try and offset all the carbs, said our prayers and went to bed.

We recently had visits at CHOP to see Gabriella’s neurologist, Keto nurse, and dietitian.  They are all quite pleased with her progress as we seem to have reached the ultimate goal of no seizures.  The neurologist agreed that we could start coming down on one of Gabriella’s seizure medications.  We were surprised to hear her suggest it because of the short seizure she had and we know they like you to be seizure free for at least 3 months before discussing medications.  We were thrilled and have started weening her off of Keppra.  It will take at least till the end of March before we are completely off and then we’ll discuss her Depakote.

We couldn’t have a better medical team than we have to guide us on this journey.  Gabriella loves to “go see the doctor”.

We went for an EEG last week and Gabriella is more aware of what’s going on…  She cried a lot, but agreed to go to “circles” aka Target when we were finished.

Results came in Friday from her EEG and the email read-“Gabriella’s EEG was normal!”

Did I say before how blessed we feel?!?!

Thank you Lord for you do ALL things well!

We are still going to physical and speech therapy two times a week.  Gabriella is doing amazing, so I don’t know how much longer she will need this…

We have had a terrible time keeping food down lately.  She has thrown up quite a bit and can’t seem to stop once she starts.  Her taste buds seem to be constantly changing too.  Things she used to love she will no longer eat.  Even in the same meal she will eat it at first and then tell us she doesn’t like it.  Since this diet is her medicine it is imperative that we get her to eat as much as we can.  Mark has just ordered a Keto cookbook to try some new recipes for her…he loves to feed people and finding something she loves has become quite a passion for him.

MORGAN IS DRIVING!

This was Morgan’s first time out on the road with her Pop Pop and she really enjoys learning from him.  He taught Ben how to drive too and I’m thankful he’s so willing!  The other night she drove me home from the store and did a great job:-)

Mark has had some trouble with his shoulder for some time.  Test results revealed his rotator cuff is torn in two places and the doctor has scheduled surgery 2 days after Christmas.  It will be nice having the older kids home from school during recovery.

Ben is home till mid January and I am so happy to have all my kiddos under one roof:-)

Wishing you JOY!

His Ways Are Not Our Ways…

Last Friday we celebrated

Morgan’s 17th birthday and 6 weeks without seizures!

It was a good day.  Aunt Ronda delivered crab cakes to Morgan at school and we were even able to surprise (she might say embarrass, lol) her with a cupcake delivery.

I can’t believe she’s 17!!!

We are still going to therapy 5 times a week, but don’t expect needing so many appointments each week.  Gabriella is doing awesome!  Well, GOD is AWESOME and is constantly doing great things in her.  She is sitting on her own now and can even stand and “pick a dvd”.  Her physical therapist says they should have recorded her journey~not all patients get back to where they were…  And we know WHO continues to heal her:)

Sunday Gabriella took her first steps!  We were ecstatic this day had finally arrived as we believed it would.  We are thanking God for all He has done!  (video on Facebook and You Tube for those who don’t have a FB)

http://youtu.be/3gKUvgdAyGk

I couldn’t help but add this one too

http://youtu.be/XcML5pD6D70

The evening ended a little rough…Gabriella had a seizure.  It was short though and no intervention was necessary…and we thanked God again for all He’s done!  Restarting the no seizure clock only confirms what we already know~His ways are not our ways…

Gabriella mentions Disney World or The Disney Store at least once a day.  Tuesday she was talking to Hannah~She asked all of us in the room if we wanted to go with her and then said, “OK we’ll all go!  Have to get ready first.”  And if you know Mark you know it didn’t take long for daddy to start looking into it.  lol

A funny moment here at the Roush house~As Audrey and Gabriella played on the floor together Gabriella said, “I want some juice.”  Audrey ever so gently rubbed her back and said, “It’s OK Gabriella, you can have some juice in two years.”  We laughed.  I’m not sure where she gets her crassness from though.  lol

I am so sorry it has taken me so long to update~it’s always busy around here.  I’ll try and do better…

Blessings to you ALL!

Resting In His Grip.

God is FAITHFUL!

It’s been a GOOD week!

I’ll try to remember the most important parts…

We had a TEA PARTY! ~but what’s a tea party without laxative hidden in your tea for a Keto Kid?  LOL

Physical, occupational and speech therapy appointments are getting easier and easier!   In fact Gabriella asked her speech therapist “Wanna play with me?” as we arrived!

Audrey held her “baby sister” for the 1st time since we’ve been home and was all SMILES!

She rolled over Wednesday evening and last night she sat up from laying down!!!  She is moving her left side more and more~not yet able to walk, BUT we’ll get there and I plan on catching it on video and will share it with you!

We were able to get her Keto meals down for two days straight!  And we were thrilled!  You have no idea what a challenge this has been.  Her food is weighed in grams with exchanges for proteins, carbs, and fat.  We choose the food, look it up in our food exchange book, then multiply by her exchanges.  Some proteins we are able to deduct grams of fat so we tend to gravitate towards those food since the bulk of her diet is fat.  Her choice fat is oil and she likes it on ice.

We decided to pull her feeding tube Tuesday night after she took her evening meds by mouth.  She was able to sleep without the worry of her pulling on the tube through the night and IT WAS A GOOD NIGHT!

God is FAITHFUL in life no matter what!

Here is a sample meal for breakfast and lunch today.

Breakfast with Heavy Cream

Heavy Cream                            25 grams (we mixed this with the egg before cooking)

Protein 2.5 exchanges                37.5 grams eggs

Carbs 2.5 exchanges                  4.8 grams reduced sugar ketchup, 13.4 grams orange, 4.4 grams applesauce (to try and hide meds, lol)

Fat  4 exchanges                        13.5 Canola oil

Lunch without Heavy Cream

Protein 2.8 exchanges                 8.7 g. pecans, 4.9 g. sunflower seeds, .8 g peanuts

Carbs 2.7 exchanges                   11.3 g. bananna  (we mix this with 4 g. of mct oil)

Fat 6.3 exchanges                       We were able to take 7.8 grams of oil away because of the fat in the nuts, so she only had to eat 17.4 grams of sunflower over ice.

Yesterday we had appointments at Children’s Hospital of Philadelphia with her dietitian and neuro doctor.  All went well.  Dr Nicole wanted to hear her talk, but she slept through the appointment and we don’t believe in waking sleeping kids.

Mark’s mom has so graciously stayed on with us and has blessed us immeasurably!!!  She has indeed lightened our load and we’ve been so blessed by her.

Thank you again for your continued prayers seems so inadequate. We feel SO BLESSED to have all of you reading this in our lives!

Blessings to you all!

In His Grip

Day of Blessings

Today we celebrated 20 years with an AMAZING SON

and FOUR weeks with NO seizures!

God is SO good!

Still making baby steps and we couldn’t be more thankful.

We were able to get Gabriella to eat almost a full Keto meal this evening!  She is talking more and more~letting us know what she wants and even told me I couldn’t tell her no!  LOL

The therapists were shocked to see her progress yesterday…and to God be the glory~GREAT things He has done!

Therapy with Ms. Margaret…

Photo at top of post taken the day before we left for the hospital.

Blessings to you ALL!

Thank you again for your continued prayers!

In His Grip…

Miracles…

The last couple days have been filled with lots of crying, constipation, and thankfully poop.:-)  I never thought poop would brighten my day, but we cheer about it around here now.

She has been eating a yogurt and oil snack and seems to really enjoy it:-)   We have turned her feeding tube off during the night to give her belly a rest, but then have to speed up the rate to try and get all her formula in.  Still working on the feeding plan….

Today we witnessed a miracle

I was holding Gabriella on the couch while Audrey played beside us.  In a silly voice Audrey asked  “What is you name?”, not necessarily expecting a response.

“GAB RI ELLA”  she replied.

We both looked at each other in complete surprise and I asked Audrey to ask her again.  I called Daddy over and with tears in his eyes he was able to witness the same joy.  Then we called Mom Mom in and she too heard the miracle!  What a happy morning it was for all of us!

It was fitting that Audrey was one of the 1st to witness today’s miracle.  She has missed playing with her little sister so and life as she knew it is quite different…  Yesterday she said she missed all the things Gabriella used to do, even biting her in the back!  lol  Now that’s a sweet sister:-)

The past few days in pictures…

Got ALL my fruits in on this day thanks to the best man in our wedding 🙂  Thank you Wasmer family~we enjoyed it!Audrey did too:-) lol

I wonder what fruit she was eating!


She couldn’t get her feet up on the petals…


but we helped her out:-)

New high tops to keep her ankles from being lazy

Gabriella’s physical therapist Ms. Margaret who received a wave today when therapy was over

Meal deliveries since the last posting

This meal came with a special message for Gabriella and yumminess inside for the rest of us!  What a blessing they have been to our family!  I LOVE getting to see people who I otherwise might not have:-) Although I missed two deliveries and regretted it so~Mary Kay and Melissa THANK YOU!

We are thankful to our Heavenly Father who has plans beyond our comprehension, and who has indeed carried us on this journey.  We know His ways are not our ways, and He will work this out for our good.  Still leaning on His everlasting arms…

To those of you who have thought of us and prayed~thank you for helping to bear our burden~You are fulfilling the law of Christ.

Blessings to you all!

In His Grip



In HIS Grip

I know it’s been a while…I’m sorry I couldn’t update sooner!

It’s hard to get a free minute let alone a free hand.  Gabriella needs one of us with her at all times~she is unable to sit by herself and is dying to rip out her feeding tube AGAIN (success 2 times already).  She needs to rest at a 30 degree angle because of her feeding tube so she’s been sleeping on mommy or daddy:-)  Whoever is not taking care of her is responsible for getting her meds/mixing her Keto-Cal diet formula.  Yes, she is still on the diet.  We are not sure how it will work when she starts eating since we were unsuccessful at the hospital in getting her to finish her meals.  Mark made her a partial pureed meal tonight, but she gagged so we’ll try again another day.

So thankful for Mom Mom!  She has stayed on with us while we care for Gabriella and keeps the older girls on schedule taking them back and forth to school, running errands, laundry, homeschooling Audrey, ect…  I walked into the office the other day and found Mom Mom high fiving Audrey with her puppet after identifying common & proper nouns successfully!  I have BIG shoes to fill when she goes back home!

We have therapy five times a week and 1st assessments have been made.  Gabriella has a wonderful team of therapist to assist us on this journey…  Yet counting on the Great Physician to call the shots and leave everyone AMAZED!

The highlight of her occupational therapy was playing in macaroni:-)  So Daddy went and bought her some!

Physical therapy today was hard for her.  She was forced to use her left side which has been difficult for her to move.  Her hands were taped to the treadmill while her body was in a harness.  I don’t know if she did any of the work herself!  lol

We took her for blood work yesterday~waiting on results…

I can’t begin to tell you the emotions that have been part of this journey.  Choosing to believe God’s got this!  Nothing is impossible for Him!  Mark 10:27 “And Jesus looking upon them saith, With men it is impossible, but NOT with God: for with God all things are possible.”

Our hearts leap when we hear her giggle at Ben hiding in the closet, or kick her foot in the tub!  And we anticipate the day when she walks again!  How many moms get to see their kid walk for the 1st time again?:-)  I am honored and hope HE is pleased with me.

Flowers arrived yesterday!  and oh how it made my heart SMILE!

Thank You to our amazing church family!

Meals have been delivered and have been such a blessing to us!  In fact Mark and I are gaining the weight we lost at the hospital in record time!  lol  Thank you Meal Train!

Thank You!  Thank You! Thank You for your continued prayers!

Blessings to you All!

In His Grip

Home Sweet Home

Sorry for not getting this out sooner.  There’s been a whirlwind of activity.

The docs on the floor want her in full time rehab, but her neuro docs along with her parents know being at home will be best.

So there was so much to do….

Mark had a class to learn how to insert and care for her NG tube and had to replace hers before we could leave

RX’s were picked up after being rewritten 3 times

Labs drawn~ and her levels were better than the day before~thank You Lord!

Medical supplies were delivered to the hospital

Dietitian appointment to discuss feeds

Speech appointment~ice chips and pureed foods cleared

Physical therapy appointment

Occupational therapy appointment

We are for certain not leaving how we came, but leaving better than we’d been.  I didn’t think about this until we got home and the older girls saw her.  They both cried and I think are in a bit of shock.  The last time they saw Gabriella she was walking, talking, playing, … things we are miracles away from now.  I told them God doesn’t do anything halfway~it’s not over yet!

She had her 1st speech appointment this morning and they feel  a few more days of rest would be good for her.  So that’s what we are doing!

We are thanking God we were able to go home, thanking Him for holding Gabriella when we couldn’t,  and realize the miracle of just bringing her home.

Blessings to you all!

In His Grip