Hope is a big sister

Hope is really proud to announce that she is a big sister!!

Lydia Dawn was born Tuesday, November 13 weighing in at 7 pounds 4 ounces. She is healthy and beautiful. Mom is doing well and everyone is set to be discharged home today.

Hope is very excited to be a big sister and to have a snuggle buddy.

Big Things for Hope

Hope has had lots of exciting things happening in her life. The first big announcement is that Hope is going to be a BIG sister!! Hope is looking forward to meeting her little sister in November. Everything has gone really well so far. Hope is also looking forward to being able to sit on her mom's lap again!

In September, Hope started school. She goes to pre-school at the Primary Center two mornings a week. Hope LOVES going to school. Really. She is all smiles. It has been really nice for Hope to meet some friends her own age. Hope has friends at school and her teachers are great!

Hope had a busy summer. She loves to be outside and, apparently, has become a big fan of camping. Hope was able to go with her mom and dad, and Grandma & Grandpa R, on a long camping trip to the U.P. in July. She also went camping at PJ Hoffmaster State Park in June and had a great time there too.

Hope was especially excited that she got to see her Grandma & Grandpa H two times recently. Along with her Aunt Kim and her cousins from North Carolina for a few days. It was a lot of fun!

Hope always has something exciting going on but that's all for now. Just thought we'd share a little bit of Hope's life this fall. She is growing all the time but still the cutest little Hope in the world.

Update on Hope's Hospital Visit

Hope is still at Motts since her admission on Monday. She has had a lot of tests done and everything came back normal, which is good, but frustrating. Yesterday, neurology started a long term EEG. They are hoping to catch one of Hope's breathing episodes during the monitoring. The EEG could last over 24 hours and then after that they may do a sleep study. It looks like Hope could be there a few more nights, but hopefully that will help them find some answers.

Hope is very thankful for everyone's thoughts and prayers and she is doing her best to tolerate all the extra attention.

Hope laughing with her mom during her EEG

Hope's Hospital Visit

Hope could use some extra prayers right now. She is currently in Ann Arbor at the University of Michigan's Mott Children's Hospital.

As you know, Hope has been off the ventilator and doing fantastic breathing on her own! However, on Sunday morning, Hope had a little episode where she stopped breathing completely and had to get assistance from Mom & Dad. They ended up taking her to the Emergency Room, but she had stabilized by that time and really just enjoyed all the attention from the doctor's and nurses at the hospital. The doctor's said Hope could go home and gave instructions to "watch closely", as if that has EVER been a problem!! Clearly they don't understand we can't take our eyes off this cute little girl!

Then yesterday (Monday), Hope had another episode in the morning where she just wasn't breathing. So Mom got her back up and breathing, called the doctors (as well as Dad and Grandma & Grandpa R) and the doctors at Motts said they wanted to see Hope, STAT! So everyone loaded up the car and they headed down to Ann Arbor yesterday. Hope has been enjoying her hospital stay, loving the attention she is getting from everyone, being cute, per the usual. Unfortunately, the doctors needed Hope to stay overnight for monitoring. They aren't sure what is causing these episodes so they are running more tests today and hopefully we'll have some answers soon.

Keep Hope in your prayers!

Hope's 300th Blog Entry

In honor of the 300th post on Hope's blog, I decided to post some recent pictures of the cutiepie herself. Please, brace yourself, there is about to be a cute overload!!!!

Hanging out with Great-Grandma

Hello, I'm waiting for some food to taste

Hope's Mommy put some of Grandma R's applesauce on Hope's tongue... her eyes got HUGE and then....

Super big smile. She LOVES the applesauce (rightfully so)

The. Cutest. Girl. EVER

I think this was mid "bouncey bouncey"

She just doesn't stop smiling

Aunt Em, you are so funny!

Hope is SOOO big

So much fun and cuteness... Hope must sleep

Hope's Tribute to Father's Day

Hope wanted to show everyone about all the special fathers in her life since she only was able to spend time with Daddy and Grandpa R on Father's Day.

Hope and her Daddy

Hope and Grandpa R (spending quality time after Grandpa R's long trip)

Hope with Daddy and Grandpa R

Hope with Grandpa H (a few months ago)

Hope with Mommy and Great-Grandpa H

Hope and Great-Grandpa H

Hope especially wanted to include pictures of her and Great-Grandpa H. Sadly, Great-Grandpa H passed away yesterday, but Hope is soooo glad that she got to meet him a few times while she was still in the hospital and that they got some good pictures together that she'll be able to look at when she gets older.

Daily Hope: Friday, June 11, 2010

Hope is doing great! Her vent rate was weaned to 31 and she has been doing very good with it. Today Hope, along with Mommy & Daddy and Grandma R., are in Ann Arbor for Hope's final pre-surgery visit. Hope will be meeting with the surgeon for her final consultation before her big day in a few weeks.

As you can see from the picture, Hope is figured out how to grow tall!! She is now 28 1/2 inches tall! Grow Hope Grow!!

Growing Hope

Just a few pictures to keep you updated on how Hope is growing....

Clearly Hope LOOOOVES playing with Aunt Em

Hope and her dad

Hope being silly

Hope got woken up from her nap to go to Great-Grandma's house.... she is boycotting

Hope and Grandma Robinson

Hope was giggling so hard, she was having so much fun!!

Hope and Grandpa Robinson

Two peas in a pod

Hope loves to tell Aunt Em lots of stories

Hope and her mom on Mother's Day!

Hope and Grandma Robinson on Mother's Day

Daily Dose: Wednesday, February 3, 2010

Hope's beautiful smile

Hope laughing it up

If she isn't the most beautiful girl in the world, I don't know who is!!! Seeing these pictures of Hope smiling and laughing has given me a little more motivation in my life and reminded me to pick my chin up and keep pushing through.

Now, back to Hope....

Hope is doing well. Things went quite well last Tuesday the long drive to Ann Arbor and the appointment. The appointment itself was rather uneventful as Hope's mommy & daddy really did not leave with any more information than they went with. It seemed to be the necessary introductory meeting for everyone: they had planned to tell us Hope would need a CT scan, hearing aids, etc. Hope has had these for months now, so there was really no new news. We have been told that we will need at least 4 more pre-op appointments with the cochlear implant team before surgery.

Other appointments last week have had more of an impact. Hope's appointment with the pulmonologist on Wednesday went extremely well. The pulmonologist was so impressed with Hope's status that they have begun weaning Hope of most of her respiratory medications, and if things continue to go well they will try to wean Hope's vent settings at our next appointment.

The somewhat less positive appointment was with the developmental pediatrics clinic. Hope was officially diagnosed with cerebral palsy (CP). Although we knew CP would be a likely outcome of Hope's brain injury, we were under the impression that it is rarely diagnosed before 2 years of age and no one was completely prepared for the news yesterday. Evidently, CP is a rather obvious diagnosis for Hope and the doctor felt no need to wait. While no one knows the form or severity of the disease yet, the news did hit everyone pretty hard.

Hope got her RSV vaccination Monday and had to be weighed beforehand. She weighed in at 24 pounds 5 ounces.... just slightly bigger than she was one year ago - 2 pounds 8 ounces!!!! Who would have thought she'd have come so far!!

As you can see from the picture, Hope has been smiling more and more and has even started laughing! It's a silent laugh because of the trach but it is still the most beautiful thing in the world right now :)

Daily Dose: Monday, January 25

Hope: up close and personal

Sleeping Hope

Hope in the mirror

Hope hasn't had too many doctors visits so far this year, but she has a big one coming up tomorrow. Tomorrow Hope (along with Mommy & Daddy and Grandma & Grandpa Robinson) will all load into the car and, bringing along ALLLLLL of Hope's equipment, will have a day trip. They will be traveling down to Ann Arbor to meet with with Hope's doctors there regarding cochlear implants. It should be quite the elaborate procedure throughout the day with all of Hope's equipment. When Hope is at home she breathes humidified air, but when she is in the car, she doesn't get that humidified air and tends to dry out a lot, which can cause her trach to need more changing or get clogged up, and we don't want that!! Since it will be a pretty long drive, along with the appointment, AND the drive back, Hope gets to take all of her home equipment, but that also means that Hope needed a bigger vehicle to make room for all of her equipment and her "escorts". So tomorrow morning everyone will load into a large SUV that the family rented just for Hope's trip.

In other news, Hope is getting back into the swing of things. Over the holidays she had a break from her physical and occupational therapists. Therapy has started back up again, and even though Hope wasn't overly thrilled at the beginning, she is starting to get back into the swing of things. She is getting so much better at holding her head up which is great!!

Hope is asking for lots of extra prayers tomorrow while the family is on the roads.

Daily Dose: Merry Christmas 2009

Hope on Christmas Eve

Hope wondering how many more presents she has to open

Hope and all of Daddy's family on Christmas Eve

Hope's Christmas Ladybug outfit

Hope with Mommy & Daddy on Christmas Day

Hope and her stocking

All of the excitement wore Hope out

After the presents, Hope hanging out with Grandma & Great-Grandma

As you can see from the pictures. Hope had a great Christmas. She was very glad to be home for Christmas this year instead of in the NICU like last year. Hope got to spend lots of time with family which she always loves to do.

We'll put more of a substantive post up soon, but couldn't wait to show you all of Hope's Christmas fun!!