A year has come and gone....

Well after my last post in July Annabel continued to have GI bleed out of her ostomy until November, 2015.  Her intestines continue to deteriorate and as recommended Annabel was placed on hospice. In Nov/Dec I decided to network locally to see about receiving breastmilk from local donors. We were overwhelmed with donations from the sweetest moms.
The bleeding stopped but Annabel continued experiencing the pain that had plagued her most of the year. She was life flighted to Texas Childrens in December the sickest she had ever been. She was placed in surgery for a very severe obstruction. They rebuilt her ostomy and placed in recovery. I truly believe Dr. M was an angel sent to us. Her surgeon since she was a baby had decided without her stomach working that he would not longer operate on her. I will be forever grateful for Dr. M.
We had her central line removed in March and Annabel was tolerating her milk via g-button and was actually receiving some pureed food in her mouth. We were beginning to struggle to keep her electrolytes up just on breastmilk and began giving 1/2 elecare and 1/2 breastmilk. Today Annabel is doing the best she has in the last 5 years eating.
With all of the progress though her seizures became harded to manage. She is on two meds every day with rescue meds used fairly often. Each time we up one of her meds she has about 2 week to 1 month almost seizure free. But then they start again. Last week, while Annabel was at school with her nurse she stopped breathing, non responsive and 911 was called. I met them at the hospital and it was decided that Annabel had a seizure. This is the 5 episode of Annabel not breathing in the last year. My prayer is that these seizure will respond to medication or we will be able to anticipate when they will be coming on so we can help her sooner.
This is a very brief update and so sorry for the errors. Each time I pass my computer I think about updating but trying to put episode in order overwhelms me.

Recent pictures...

 The photos from above are from this past week. Annabel was bleeding again out of ostomy even though not as bad as the beginning of the month. So we went in again for a scope and also a scan to see the blood flow that was getting to her bowel. Some of the words describing her bowel have been friable, necrotic,and ischemic???

 These two photos are from home where she is most comfortable in her bean bag. Even though for her scoliosis, kyphosis she needs to be sitting in her special Rifton chair. These days Annabel is very uncomfortable sitting up. Also Annabel is holding her nephew Flynn. This is Derek and Linzy's first baby and our First Grandchild. She is very gentle with him.

 This was the first of July when she had the major GI bleed and was so ill. Annabel tolerates very little in her tummy so they place her on NG suction in the hospital. It hurts this momma so bad when she retches so many time a day. They have converted most all of her meds to IV as of late. It is easier on her but I still get so nervous having to access her lines so often. After this hospital stay Annabel came home on 4 IV antibiotics, which meant accessing the lines 12 time daily for antibiotics alone, the 4 times for benadryl, 2 times for zofran, 1 for protonic and then up to 6 times daily for pain.

 Here is Annabel enjoying some therapy time. When she is feeling well, we try to sit her up and play with her balls. She loves to throw and will catch over and over. How it warms my heart to see her so happy and feeling better.

 Not such a great day for Annabel. We love spending time at the beach and in the past love to swing and rock on the porch. It now makes her sick so we just sit out and enjoy there breeze.

 This is Annabel on one of her good days with her therapist Meg. She sure loves Meg... On a great day we can get Annabel to bear weight.

These two photos above are our Grandbaby Flynn David. How we adore our first grandchild and Linzy and Derek are more than generous with allowing us grandparent visit. It pays to live right around the corner. he is really beginning to smile and he is a very good baby!

We need answers and a plan..

Annabel is inpatient in Houston. She has had ongoing pain and vomiting. She has had small amount of bleeding out her button when we vent her. But Sunday she spiked a fever at the beach and began vomiting and was in pain. We left right away for our home hospital where she began putting large amounts of blood out her ostomy.  That is what led us to be transferred to Houston. Fever improved, they placed a ng tube into her stomach and this helped with her vomiting.
She does have an infection in her blood, the scoped her and her bowels are described as severe and friable. The next few days will tell us more as to what is going on with biopsies. Thank you that you keep reading even though I can'tseem to sit down and write out my words.