Skip to main content

Day 11

Finally on Day 11 Ivey made it through an entire day without a seizure.  Yippee!! 

The past 11 days have been the extreme of extremes.  We know she has sinusitus - agian.  It is a monthly occurance and battle.  Due to a debunk immune system and abnormal facial structure it is a 'normal' for her. These things send her spiraling -

I have to tell our medical staff how grateful we are for having them, and how thankful we are for trying to make the back and forth of communication simple and for trusting our judgement as much as we trust theirs.  It has been over a week and a half of meds and sleepless nights and the eagle eye of monitoring for the slightest hiccup in her behavior to signal she just jumped to the next level- I think we can exhale today- she's back. 
 
Despite a seizure marathon, Ivey has been at school each day, working hard - keeping us busy here at home trying to stand (see video below), making the most of ballet classes (pictures coming soon) and even sitting in the bleachers cheering on the girls Varsity basketball team(Go Tigers)!  Extreme of the extreme.  But I don't expect anything less from my girl with the mostest.

Comments

Heather said…
First,I missed the change in header quotes when I came yesterday.Sad we don't have that common quote bond anymore but really,really loving the new one.It is just perfect.

so sorry about the seizure extreme as of late,but i know you all,especially Ivey,are pushing through it with the same grace and dignity as always.

Cannot wait for the ballet pictures.You know I might just cry,don't you?

Lastly,I wanted to tel you about a give away going on at marissasbunny.com,her family and her dad's bosses are giving 5 iPads away,based on merit only,no donation just based on story and need and I really think you should email Ivey's story and try for one.I am totally clueless about all the apps and what might be applicable to Miss Ivey but I can only imagine it would be a super great tool for her and you all.Let me know id you cant,find the blog.It is on my sidebar under Bunny Blog.

Take care my friend and love to you all.

Popular posts from this blog

BEAUTIFUL GREEN EYES........

Submitting to Lack of Control

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need for order raises it’s merciless head. 

Ivey Elizabeth Sirmans

Ivey Elizabeth Sirmans was born Tuesday April, 25th at 5:26 a.m. She weighed 5 lbs 11 oz and is 17 inches long. She has beautiful long fingers and toes like Gwen, and her hair is dark like Matt's. She loves to be touched and is happiest when she is being held. Ivey is a strong little one who is breathing on her own. Her strength is a blessing as she will face some challenges in the future. The initial genetic testing showed Ivey has a partial deletion of chromosome 21. There are many tests pending, and as we find out more, we will let everyone know those results. She has a double cleft palate and a cleft lip which will require surgery at some point in the future. She is blind. She has had one hearing test which will be repeated due to the noisy NICU. The aortic valve in her heart has 2 leaflets instead of 3, but despite this, her heart is working wonderfully. Currently, she has a feeding tube in her nose, and she is learning how to nurse from a bottle. Once her feeding is successfu