Friday, May 28, 2010

long weekend

What a weekend!

On Saturday we left Richfield a few minutes late (2.5 hrs actually) and headed to Provo for the NICU 30 year reunion. We were excited to go and hopefully run into a few people from the NICU. Kurt took Gavin to do some of the activities while I fed Jenna, Gav loved it they had face painting, fishing for prizes, and lots of treats. While I was setting there feeding Jenna I saw one of Jenna's angels walking down towards me. I was surprised that tears started to fill my eyes. Here name was Annie and she was the best thing about the NICU. She helped us daily try to feed Jenna. She was so sweet to Jenna and such an advocate for her. I remember her telling me before we left, "many people are going to try and count her out and say she cant do things, you treat her like a normal baby and she will do anything!" And that is exactly how I treat Jenna. We also ran into one of the receptionists that works at the NICU, with all those late nights you find anybody to talk to. She was a really cute girl named Bonnie, she came back to the reunion twice to see if we came! What special people you meet there!

Then on Sunday we drove to Spanish Fork to meet with the Hallow's family about their sweet daughter who has a cochlear implant. We received a lot of information about the implants and it was wonderful to see how well their daughter is doing. She also invited a friend of hers whose daughter has an implant and it was good to hear her story as well. God just continues to bless us all with miracles and she is one of them. I am so thankful to them for opening up their home for us!

Monday started off with an eye appointment at the Moran Eye Center in Riverton. We met with a new Doctor, Dr. Larsen. He was wonderful. He was so good with Jenna. He amazingly enough said that Jenna has equal vision in both eyes. Remember when Jenna was 5 days old they told us she was blind in one eye and missing the optic nerve. Well thankfully that doctor was WAY wrong. I call him Dr. Meaniepants. :) Have to have humor when you go to so many appointments! She does still cross her eyes, mainly her right one, so we scheduled a surgery to correct that towards the end of July. They will also open up her tear ducts so that her eyes wont be so runny.

Tuesday was her ABR, hearing test. I was hoping for a miracle that it would have different results than last time, but it didn't. It still showed profound hearing loss in both ears. I will meet with the ear doctor on Tuesday and we are hoping to start progress on getting her an implant.

Jenna continues to be such a wonderful baby, I couldn't ask for more! You would never know that anything was wrong with her, she has such a sweet spirit about her. I feel so lucky to even have her here in my home that it makes things like her hearing and ears seem like nothing to deal with. I never realized how much we take for granted. The lady we met at the Hallow's likened the hearing loss to a death. You mourn these things and it takes time to get over the thought of your child having an "imperfection." With Jenna I always say God gave her a body and earthly life, the rest is a luxury we can deal with not having. I know she communicates with me in her own way. Her and Gavin have a bond that seems unbreakable, I know they were friends in Heaven, you can just see it.

And of course after having a long weekend away and busy, we are all sick! So now I will work on getting us all better! And in 1 week we are headed to DISNEYLAND!! I have never been so excited, this family needs a vacation!


Adam and Dev said...

I didn't know you met with my sister and her friend (who I don't think I know). You have such an amazing attitude Tara and Jenna is lucky to have parents like you guys :)

Kelly and Stephanee said...

Sounds like your kids are keeping you busy! I hope that things go well for Jenna, and your lil' family! You have such cute kids!

. said...

Annie made the biggest difference in our stay also. She is so amazing. I wish we would have been able to go, Dustin flew in from his two week summer camp! Glad she is doing so well!

The Erdei's said...
This comment has been removed by the author.
The Erdei's said...

You are such a strong person. It brings tears to my eyes just reading your blog. It makes me remember not to take the small things in life for granted. Good luck on tuesday. Hope everything goes well. You are in my thoughts and prayers. :)

The Belnaps said...

I hate you for making me cry every time I read your posts..hello I just did my make-up :) You are amazing and i continue to admire your strength and attitude. I loved listening to Jenna's babbling at church on Sunday.

Karen Kunzler said...

Wow!!! What a bless that Jenna's eyes are ok. What a blessing. We will be praying for you with the surgery. Shannon had to have surgery on one eye's tear duct and my nephew that had the deformed arm (I don't know if you remember him, we took care of him once) he had to have surgery on his eyes because the crossed. So that is two successful surgery's to hold onto.
Sorry you are all sick, but hey you have disneyland to look forward to. Have a GREAT time!!!!!