Daily Dose: Monday, August 24

Hope is getting ready to go home!!!

Tomorrow is the big day!!! Everyone is ready and excited!

Hope had her ears checked today. They took her down to the OR around 9 am. A small incision was made in her ear drum and the ENT was able to drain a small amount of fluid off, nothing impressive. He noted that her ear canals are small and that the inner portions of her right ear appeared slightly abnormal. Upon finishing this portion, they repeated the BAER/hearing test. They performed the test two ways; by air conduction and by bone conduction. Hope did not exhibit a response to either mode. This leads the doctors to believe that Hope is deaf. This is difficult news to hear but not altogether surprising as she has not passed prior hearing screens. The good news is that the doctors think Hope might be a good candidate for cochlear implants. They performed a CT scan of her temporal bones this afternoon to see if there would be any obvious physical hindrance to the implants. We have not gotten the results back yet from this scan. In order for the doctors to consider the implant, Hope has to complete a 6-month trial with hearing aids. This is for several reasons; occasionally the hearing aids improve hearing more than they thought, plus, the implant would not likely be done until Hope is at least 1 year old. We will be contacting the hearing aid doctors tomorrow to get the ball rolling for this. We ask that everyone continues to pray for a positive solution for Hope's development.

This has been a trying journey at times, and today's news wasn't easy to learn, however, we are so blessed and so thankful that tomorrow we will have our beautiful Hope home with us. This joy is not to be diminished in light of today's news. We should all celebrate the amazing strength Hope has shown over the months. Tomorrow will be a joyous day!!

Daily Dose: Thursday, August 20

So much has happened the past few days but no updates. This was partially because Hope's Mommy & Daddy were very busy and couldn't send Aunt Em any pictures. Last night they all had a sleep-over, aka "rooming-in", at the hospital. This was where Hope and her Mommy & Daddy were in a room all by themselves all night. This went very well for everyone so one more thing completed on the way to bringing Hope home.

Hope is scheduled to have her ears and hearing checked again on Monday morning at 9am. We are praying extra hard that there is fluid behind her ear drum that is contributing to the hearing loss and that it will be an easy solution to help her. Please keep Hope in your prayers this weekend.

Hope is checking even more things off her "Going Home" checklist. Today she had the carseat challenge. This is where the contest sits in her carseat for two hours. Hope was an amazing contestant, coming in first place sitting for a record setting 3 hours with no trouble at all. GO HOPE!!!

Hope is also continuing to gain weight. She is now weighing 14 pounds and 14 ounces!!

So for the big news.......

5 days until Hope comes home!!!!

Daily Dose: Monday, August 17

Hope had a good weekend and a good start to this week. Her ENT (ear nose and throat) doctor took a look at her ears today and didn't see anything obviously wrong. Before Hope goes home the ENT plans to put her under sedation and check to see if there is any fluid behind her ear drums. If there is a significant amount of fluid then likely Hope will get tubes in her ears. During this process, while she is sedated, they will run another diagnostic hearing test.

The countdown continues...... only 8 DAYS until Hope comes home!!!!

As you can see from the pictures above, Hope's room is finally all ready for her. It is pink (because apparently that's what little girls like) and has lots of ladybugs. Hope is very excited to come home and play with her ladybugs and her new toys and everything else!!!

Daily Dose: Wednesday, April 15

Hope had a very busy day today with lots to report on. Because her blood level is low she had multiple episodes. To eliminate the episodes the doctors have put her back on the vapotherm, at least until she can start making her own blood and get stronger. Her blood levels are quite low, but her labs seem to indicate she is trying hard to make her own blood. The doctors want to hold off on transfusing her (unless completely necessary because things get worse) because this is a struggle that Hope will have to face one way or another, and it might as well be while she in the care of the doctors and nurses at the hospital when she can have all the support she needs to get through it.

Hope had a hearing test today and neither ear passed. This does not necessarily mean there is a problem, or that it is a major problem. The test (which Aunt Em thinks is ridiculous) has no degree of pass or fail, you either do or you don't. What the test does mean is that Hope will need to be tested again by an audiologist when she comes home. Often kids who don't pass the hospital's hearing test do well with the audiologist, but Hope's doctor told us that, considering her brain ultrasound results, it is more likely that Hope will have some hearing difficulties.

Hearing difficulties do not necessarily mean profound deafness as there is a large range of impairment. If there is an impairment, it is not necessarily related to Hope's brain issues as hearin gimpairment is th emost common difficulty diagnosed at birth. Many times these issues can be mitigated with hearing aids or surgery.

So what does this tell us? This tells us that this is something we should be concerned about, follow up on, and prepare for possible early intervention. The good news for Hope's Mommy & Daddy is that they have a basic understanding of how you support a child with a hearing impairment. They are both fully capable of learning sign language if that becomes part of our reality. Given the broad spectrum of challenges Hope may face, this is one of the easier ones for Hope's family to support her through.