When we woke up this morning we met with our
lawyer. That’s right, we got a
lawyer. Why? Because after the child abuse expert “said”
that the OI doesn’t rule out child abuse, we
knew we were in trouble.
Upon arrival at the attorney’s I handed them stacks of
paperwork. Information about OI,
clinical diagnosis standards, types of OI, the dangers of mishandling an OI
kid, our feeding charts for the past month, our appointment schedule for the
past four months, letters of support and praise for my house, my mothering
skills, my children – everything we could think of, we brought it.
Our attorney called the social worker to figure out
what was going on. We find out that the
child abuse expert had actually not even reviewed Avery’s files! Everything that he had based his opinions off
of was transmitted from me to the social worker. He had never even looked at a single x-ray!!
Our attorney was livid! How can the
county base their decision for removal of children based on an expert who hasn’t
reviewed the files, met the patient or family, or even seen a single x-ray of
the fracture?! He got on the phone with
the state attorney and he (politely) raised hell on our behalf.
Thank God for that man.
The state attorney eventually said that everything
needed to be put on hold. Avery did not
need to be removed from our care, especially with an OI diagnosis. Our older children, Madi and Kailee, were
off-limits because they had complete skeletal x-rays and they were clear. So, with that, the state attorney told us to
figure out a plan that would keep Avery with her family.
So that’s where we are. Avery is going to come HOME to us on Monday! She is still in the hospital, and we haven’t gotten her a g-tube placement date yet. The agreement between county and our attorney was that Avery would be allowed to reside in our home, with us, as long as my sister (my AMAZING sister) is present.
Legal custody was still turned over to county, although
only on a temporary 60-day basis. That means
that essentially we are unable to make any legal decisions regarding Avery’s
care, medical needs, or otherwise.
However, the person who was put in charge of Avery (legally) seems to be
very compliant and willing to work with us.
She recognizes that we have been with her since birth and know her
medical needs better than anyone – but also warned us that her decision
ultimately will trump ours.
Madi and Kailee are allowed to be alone with me and
Matt again. Thank God. We were constantly saying that we should let
Matt go here and we’d go there, only to realize that he couldn’t go anywhere
with the girls. More than anything, it
was inconvenient!
Right now we are waiting for g-tube placement to be
finalized to get Avery discharged. She
has pulled out her tube 4 times in 2 days.
Far too many to take her home with an NG tube. The anesthesiologists here at our local
hospital won’t do a g-tube placement on Avery because of her reflux, her
weight, her size, her condition, etc… so we were referred to a Fargo
hospital. They are busy and probably won’t
be able to fit her in before Thanksgiving.
Our next step would be to go to Mayo – but TriWest won’t cover
that. Our final option is to travel to
Minneapolis for the g-tube placement. We
told her primary physician – whatever you have to do, do it! Let’s get this baby girl home where she
belongs.
With that, I’d like to thank each and every one of you
for your love, support and encouragement.
Today when I got back from court I had 47 notifications on Facebook, 8
messages and thousands of words of encouragement and support. You have made the difference. 
(Please visit "JessiLeigh Photography" on Facebook and tell her how amazing she is!)
We are eternally grateful.
However, our fight isn’t over yet. CPS is still involved. They retain custody of
Avery. We have to prove we are fit
parents, still.
And more tragically than any of that, there is another
family in desperate need of love, support and encouragement. Please visit www.hopeforelijah.com to read about
Elijah’s journey with OI, undiagnosed, and the fight his family is putting up
for him.
***My new goal is to raise awareness of OI – the hardships
of having a child, getting a diagnosis and furthermore, preventing another
family from going through child abuse charges because of OI. If you’d like to get involved in the
movement, stay tuned! ***
Your amazing with everything going on you are still thinking about others. Avery is on purpose pulling the tube out. Watch now that she is going home with her family she will stop. She loves her mom, dad, and sisters. I will continue to pray for you. Hugs!
ReplyDeleteyour story has touched my heart. I will continue to pray for your baby girl and your family. I can tell you are a loving mother and I hope that OI knowledge can be spread with your story. I continue to wish you the best! Keep the faith, this is making you stronger.
ReplyDelete-Chloe
I just finished reading your story and tears are flowing. Previously, I was employed by a foster care placement agency but was not involved in the foster care aspect of the company. I did intensive home based family therapy for families that were in jeopardy of losing their children to the foster care system. Just by reading what you said, my heart broke several times over in knowing how the system works. You are correct in saying that you have to prove your innocence just to keep your children. May God bless you and your family. I am so thrilled that your daughter is coming home and not going into the "system." She is going to be where she needs to be and where she will thrive and grow!
ReplyDelete