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

Post Surgery Update

Hope made it very successfully through her cochlear implant surgery. She arrived at U of M and check in around 12:30pm on Thursday. After getting all checked out (blood pressure, temperature, weight etc) we found out that they had not reserved a bed (room) for her following the surgery. There was a scramble to find a bed and when we came close to not being able to find one for her we almost had to pack up and come home. That would not have made anyone very happy! Eventually though (about 2 hours later) they had a bed for her and Hope was wheeled off for surgery.

The surgery began with a test that involved putting needles in her ear and electrically stimulating her auditory nerve. They began with the right ear and found no response. Then they tested the left ear. They had to use more "power" than usual but were able to get a good clear response on the left side. However, they found that as they repeated the stimulation the response diminished. This is called "Adaptation". Unfortunately there isn't a lot of research or knowledge available on this condition. The surgeon felt that it was still worth proceeding and that Hope would still be able to gain access to sound by having the implant done.

Hope's mom, dad, Grandma Holtz, Grandpa Holtz, Grandma Robinson and Grandpa Robinson all waited patently in waiting area for the next 5 hours while the surgery was performed. Everyone was very eager to see her after the surgery and she looked great! She was a bit groggy but seemed to be feeling well. Hope had to stay one night in the hospital but was released the next morning. Although she has been a little more sleepy than usual, she is feeling well and is mostly back to her normal self. There is just a small incision behind her left ear. She will go back to see the surgeon again in two weeks and the big day of activation is August 17th!

Hope: day 29

Hope had another great day today. Her feedings have been increased and her residuals are down, which means she is tolerating her feedings well. She is now up to the WHOPPING weight of 790 grams, which is a "heavy" 1 pound 11 ounces. She is quite the porker now!!! Hope's medical staff have a goal to get Hope to gain as much weight as possible in the next few weeks. So they have her on the "accelerated weight gain program". I think I was on that program once, it was called Thanksgiving.

On the day scale, there were deep discussions and disagreements about where today fell. The final consensus was that today was a 7.85, which is a long way above 7. There was also a lot of conversation about grades and other things that really don't matter just yet to Hope, so I'm going with the 7.85 that Hope's mommy and daddy provided.

Daily Hope: Monday

Hope: Day 22

The Daily Dose today is a picture of Hope's Dad helping to reposition her. Hope resumed her feedings today, which is great because that means she can get bigger and stronger!! The feedings are going well so we pray that continues. She is back onto room air with the ventilator and has continued to be weaned off the Dopamine (for blood pressure) but still has to take that. Her chest x-rays showed some regression, but overall things were doing better than yesterday.

According to very credible sources (Hope's mom and Grandpa), Hope misses her Aunt Em; however, she allegedly also misses Christmas Bear and Kwanzaa Zebra. Hope can live without Aunt Em, but take away her little friends and she gets mad!! Grandpa said that Hope was very active today, kicking and moving her arms around. In my opinion, she was totally throwing a temper tantrum because Aunt Em wasn't there. Yes, that's definitely what was going on. Aunt Em must go back very very soon!!