She's Slowing Down

Annabelle is having more and more waves of sheer exhaustion. She’s pushing through, but she’s also slowing down faster than she ever has before.

Some days she may have a great day which includes: 1 hour, 2 at the max of playtime.. followed by several hours of exhaustion, sitting or laying, resting or sleeping.

Some days she doesn’t have such a great day which includes: small chunks of time playing.. followed by a full day or several days of sleeping. 

Annabelle seemed to be having a good day Saturday so we decided to get out of the house for a bit. We headed out first thing in the morning to get the best use of our time with Annabelle. One quick lap thru Kohls and she was wiped out by Home Depot. I didn't complain though.. I found myself a comfy chair and Belle slept while I rested and AK and Mady shopped :) Works for me!

 

Her speech has blossomed so much, she amazes me. She is communicating much better with both words and showing us what she wants. Her vocabulary is still only about 10 words, but that’s a great improvement from the 4 words a few months ago. However, the last several days, she hasn’t spoken at all. She won’t even say simple things that are a normal part of her vocabulary such as, “Sissy – mama – cup – please”. I can’t tell if she is stubborn and doesn’t want to speak, or if she can’t and has temporarily forgotten. During these times of not talking, she also doesn’t ‘show’ us what she wants/needs. The communication barrier is sky high once again and the entire house struggles. Speech therapy is every other week in our home, I am considering rescheduling that to each week so she consistently has someone working with her and encouraging her communication. This is a conversation I will be having with the therapist this afternoon after she meets with Belle this morning.

She’s Forgotten How To Eat...

I didn’t know this was truly possible. When we first got our EoE diagnosis, I was encouraged by many people to have her setup with a feeding clinic.. I was reluctant. However, when I called, I was told that I cannot even put her on the waiting list until she begins eating food again. She has been eating for almost a month and still isn’t able to eat. It’s heartbreaking. She takes a bite of an apple, chews, chews, then spits it out and takes another bite. Most times she will store the chewed food in her cheeks like a chipmonk. She cannot grasp the concept of bite, chew, swallow. She still hasn’t begun to eat and it’s only beginning to get more and more frustrating for her on a daily basis. She can do a pureed food pretty well, but nothing that actually requires her to chew + swallow.

I called the feeding clinic and it will take a minimum of 9-10mon to be ASSESSED. Then she will go onto the waiting list to begin treatment which could take up to two years. Are you kidding me?! It was hard to compose myself over the phone as I asked the lady, “Are you seriously telling me that as I call you right now for help for my child, you’re telling me it will take up to almost 3 years before she can begin treatment?” Freaking incredible. No thanks.

On The Topic of Foods…

With the most hesitation, knots in my stomach and lump in my throat – It’s really starting to look like Belle is failing her food trial of apples. Sweet Potatoes were a definite, clear fail. She relapsed within a week of eating sweet potatoes. We treated her and it appeared she has fully recovered from that flare. Apples haven’t looked the same as sweet potatoes presented itself. However, she isn’t looking good either. Her sleep is still erratic (although that isn’t completely due to food, I’m positive), she is vomiting every couple days out of the blue.. for several weeks now. And finally this week the coughing and choking has begun again. She does well when trying applesauce, but chokes when attempting to drink Elecare. Her cough is raspy. Annabelle is with her old sitter this week, the same god-send that made it through the journey with Annabelle that led us to her first EoE diagnosis. When she heard Annabelle’s cough, it also sounded all too familiar to her as well, enough that she contacted me to confirm what I was fearing.

I called Annabelle’s Allergist AND GI at CHKD Monday morning and haven’t heard anything from them yet. I am looking for direction from one of her specialist, either her allergist or GI. It’s a tough decision to decide what to do. We can either take her off all apples, consider this a fail, treat her for another relapse and end the trial. Or I can continue giving her apples and we can scope (Upper/Lower Endoscopy) to confirm via biopsy that she has relapsed. 

If we want to scope: Dr. Teasley has to approve the procedure because it involves anesthesia. I really don’t want to continue putting her through surgery (each time she has an Endoscopy, she is terribly sick for weeks afterwards from the intubation). And we would have to continue giving her the food that’s making her sick until the actual procedure. These decisions can all be made after tomorrows meeting with Teasley and when our specialists at CHKD call back, they better call soon.

Annabelle had a slow day yesterday. She seemed very emotionless, wouldn’t talk or speak, didn’t want to play too much and slept a lot. After times she would play with her little friends, she would quickly crash and need plenty rest not running, walking and just laying down. I’m still amazed at how fast this little girl depletes of energy.. on days that I feel like a trip around Kroger kicks my butt, my heart aches when I see my daughter run 5 circles and needs to lay down afterwards. Here is a video sent from the sitter during the day yesterday. These videos and seeing my babies melts my heart while I am at work and cannot be with them. They are priceless.

When I picked her up and brought her home, and was an emotional basket-case, cried over everything and wanted to be held the entire evening. I ran to pickup some home-grown apples from an aunt while Mady went on a date with her daddy. Annabelle cried during the drive 15min down the road, and refused to let me put her down while we were there. She wouldn’t speak to anyone, she just wanted to lay her head on my shoulder and stare away blinking as the time passed. 

I brought her home and made her a cup for bed. Annabelle was less than happy for the evening. She cried her little heart until I surrendered and we put her to bed. It's always a tough balance; 'Is she testing us? Is she just overly tired? Or is she hurting and really needs us?' Last night we took the approach, "Sweetheart, you're exhausted, go to bed.. you are going to have to cry it out." :( Still though, it breaks my heart. If she would fall asleep while I held her, I would spend days and days rocking her in my arms with a warm heart. 

Mady stayed up late with mommy and daddy. We talked about her date with daddy, they went to the movies! She saw Smurfs 2 and was so proud to tell me about the experience. Finally I told her it was time to go to bed.. until I tried to open her door and it wouldn't open. . . Belle had fallen asleep on the other side of the door! Silly little girl. 

I have been speaking with Annabelle's nurses at her pediatricians office. The GYN that wants to perform the Pelvic Exam under anesthesia cannot do the procedure until next Monday, the 26th. She also cannot perform the procedure without Teasley's approval. Tomorrow is the big, big day. My stomach is already in knots and I am doing everything in my power to put my game face on. Tonight I anticipate sitting in my dining room with my bifocals on and collecting, organizing, and writing down notes, questions, concerns, game plans and anything else that will need to be discussed with Dr. Teasley's Team tomorrow. I am praying with all my might that she will shed some light and aggressively help Annabelle and our family find answers for what is happening. If I don't feel as though she will quickly offer Belle relief, I have every intention of packing our bags and moving her care to another hospital. Fingers are crossed that Richmond will work out for us and MCV will finally prove they care about my baby girl. It's time they step up, of not, we're walking out to find someone that will.