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

Easter & Doctor Updates

Hope in her Sunday Dress

All Smiles

Surveying the Easter Bounty

Cuddling with Great-Grandma Anderson

Hope has had a wonderful couple of weeks. Now that we are coming out of RSV season (cold and flu season to the rest of us) Hope is able to get "out and about" more. She celebrated her "freedom" by making a trip to church on Easter Sunday. Everyone was so happy to see her and she was so happy to get all of the attention :)

After church Hope headed up to Great-Grandma Anderson and Great Aunt Dawn's house to see what the easter bunny had left for her there. After surveying all the colorful eggs E.B. brought she headed home for a nice long nap.

Hope had so much fun at church on Easter that she wanted to go back again this past Sunday, so she put on her pretty white dress and her most sparkly shoes and headed back to church. The easter bunny didn't come to visit her again this week, but she was okay with that because she got some good cuddle time in with Great Grandma Anderson instead. Both Hope and Great Grandma were so comfy that they dozed off and tried to skip lunch.

In doctor news.... Hope's latest trip to the pulmonologist was VERY successful. They lowered the amount of some of the medications she is getting and they have begun to lower her ventilator settings. This is the first of many, many small steps to getting Hope off of the ventilator and eventually without the trach. So far Hope has tolerated the changes VERY well. She has to go in for lab work this afternoon to make sure that everything looks good. Hope doesn't like having blood work drawn :( Hopefully the technician will be very nice and gentle.

March 26, 2010

Hope with Grandma & Grandpa Holtz

Grandpa and Hope showing off her new outfit



Out for a walk


My new pink hat (Thank you Jackie!)

More cuddling with Grandpa & Grandma


It has been quite a month for Hope. Hope spent last week cuddling, playing and visitng with her Grandpa and Grandma Holtz who came to visit from North Carolina. They spent lots of time catching up and Hope was so very happy to see them again.

We were all enjoying the beautiful weather last week and Hope didn't want to miss out so we all ventured out for a walk one day. She wasn't too thrilled about having to wear a hat and bundle up but once she got her pretty new pink hat she didn't mind wearing a hat so much. We are all looking forward to the warmer weather so we can take more walks!

We have made a few more trips to Ann Arbor in preparation for the cochlear implants. Hope, Daddy & Mommy met with the surgeon on their last visit. So far there doesn't appear to be anything that would stand in the way of Hope receiving the implant. We are now just waiting for the final insurance approvals. Once we have those, we will have a couple more final appointments (to pick out the actual implant device and to have a final pre-op meeting with the surgeon) and then the surgery should be scheduled within a month after that.

Hope has several appointments this week. The big one is with the pulmonologist. After Hope's last appointment with the pulmonologist they said that if she was doing as well at this appointment as she was at the last, then they would consider lowering Hope's ventilator settings. This is a HUGE step forward; it will be the first time Hope's ventilator settings will have been lowered since she left the hospital. Pray that eveything goes well.

The other big news that Hope has is......HER FIRST TOOTH has popped through! Actually the second tooth popped through just this morning! She is on her way to a mouth full of pearly whites :)

Wednesday, March 3, 2010

Hope has had a busy week. She made two trips to Ann Arbor; one on Friday and one on Tuesday. The trip on Friday was quite the adventure for Hope. Hope, Mommy, Daddy and Grandpa Robinson all made the drive to Ann Arbor with no trouble, but while they were there it started to snow. The roads got really bad and it took them all twice as long as it should have to get home. Thankfully they all made it safely. The trip on Tuesday was much better, with lots of sunshine and no snow!

The doctor visits themselves are more of a formality at this point. Hope has to go through some basic hearing tests in the sound booth. They play sounds into earphones in Hope's ears to see if she seems like she is responding to the sound. She also had to meet with a speech therapist to determine her basic level of communication. So far everyone has determined that the cochlear implants are neccessary and wouuld benefit Hope greatly. We meet with the surgeon next week on Friday and then have one more consultation with the audiologist. The surgery hasn't been scheduled yet but we should know more about that before long.

February 21, 2010

Hope Admiring Herself in the Mirror

Hope has had a very good couple of weeks. She went to the nephrologist (kidney doctor) and many of the concerns that they had previously, we are no longer too worried about. Her blood pressure had been a little high but the doctor thinks it might just have been the inaccuracy of the blood pressure cuffs, so we aren't going to take her blood pressures regularly any more. Also, her latest blood work came back normal which is fantastic. When Hope was hospitalized back in September she had a lot of blood work done then and in the weeks following. Based on that blood work the doctors assumed Hope's kidneys were only working about about 50%. With this latest batch of blood work coming back normal they think that the spike we saw last fall was mostly if not all tied to the infection that hospitalized her and that her kidney function is far closer to normal than we thought.

Hope will be venturing back to Ann Arbor this week to begin her weekly pre-op visits for cochlear implant evaluations. She has to go 3 or 4 times in the next few weeks for evaluations and then once in March to meet the surgeon who will do the implants. Hope is not officially a candidate for the implant yet - she will have to have hearing tests done by the audiologist, with and without her hearing aids. If there is some evidence that she can hear but not well (even with the hearing aids) then she should be a candidate for the implants without further testing. If we don't see evidence of hearing then an MRI might be needed to confirm that her auditory nerve is present and at least some what developed. Hopefully these visits all go well; they make for long hard days for Hope.

Other great progress that Hope is making is that she seems to be reaching for some of her toys. She has grabbed on to a toy and picked it up once and she grabs for the toys in her crib. The is wonderful progress as one of her physical therapy goals is to develop an "active grasp", or taking the initiative to grasp an object instead of just holding on to it because it was placed in her hand.

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!!

Daily Dose: Tuesday, December 22

Hope & Great-Grandma

Hope looking cute in her cute slippers

Hope hanging out in the living room

As you can see from the adorable pictures, Hope is doing pretty well. In the first picture, Great-Grandma was worried that Hope's hands were getting cold so she decided to share her gloves, always thinking. Hope also has some great little bunny slippers.

Hope has been doing good. Her weight has been pretty consistent, she is weighing in at 23 pounds!!!

The only big change for Hope is that she has currently been relocated from her bedroom to the living while her bedroom is being remodeled. Hope definitely misses her bedroom, but she has enjoyed looking at the Christmas Tree nonstop and has been pining over all the boxes under the tree, imaging all of the things that are inside of them. Hope definitely likes Christmas but DOES NOT enjoy the snow and the cold. She has been wondering why the family farm isn't in Florida and why Great-Grandma was a farmer not an alligator rancher in the warmth.

Daily Dose: Happy Birthday Hope!!!

The Birthday Girl in her Birthday Dress!!

Hope was laughing and having a good time

Hope in her "little room"

First and foremost we are wishing Hope a very very VERY Happy 1st Birthday today!!! It is hard to believe that it has already been a year since Hope was born. Quite the year!!

As you can see, Hope had a lot of fun today. She had a special birthday dress with a pink tutu. She liked it well enough to pose for the obligatory pictures but then it was off with the dress. Hope had such a great day today. She was laughing and smiling most of the day.

You can see Hope in her "little room". Hope loves to play in her little room. It has lots of items that are hanging from the top so she can reach up and grab them, or hit them, or kick them. She spends lots of time in her little room playing with all of the things.

While today was Hope's actual birthday, Hope got a mini-party on Saturday when Aunt Em drove up to spend some time with her and the family. Here are some pictures from Saturday's hoo-rah.

Hope was wearing another adorable ladybug outfit!!

Hope with Mommy & Daddy, getting ready to open her presents

Hope decided against the cake but she wanted cupcakes so here she is with Aunt Em and cupcakes.
After the presents were all opened Hope got to chill on the couch

Hope and Daddy playing on the floor