Friday, November 14, 2014

Glimmers, Frustrations, and Next Steps


I'll start by saying that Abby was happier this evening than I have seen her in 9 days.  She had lots of visitors and thoroughly enjoyed being in the playroom with them!


  She even enjoyed herself earlier today building an ambulance with Home Depot kid projects.


  That one tested my skills!  She had a good time playing with the clowns who came to visit.  I was impressed with how purposeful they were with their play to incorporate fine/gross motor!

I had her up and moving as much as possible to try to encourage using those muscles.  We did puzzles, walked around the floor, made little toy frogs jump, looked out the big windows inthe hallway, and did a few crafts in the playroom. 

So I feel like my girl is heading back to me a little.  There's still no talking and communication is slow, but at least she seems more conscious of what is going on around her.   We still have times when she is far away, but at least I am getting some glimmers of hope!

We haven't seen much improvement with the physical concerns.  She is still very shaky, is very reluctant to use her arms, has no grip, and lacks trunk control.  I am still moving her in and out of bed, she doesn't sit up well without support, can't pull up her pants or help get clothes on, etc.  

After talking to a lot of people today, including our awesome therapists at home, we have determined that our next step will be an evaluation from Kennedy Krieger.  I was told that this was really more than I could handle as a parent, and I agree. I will do whatever I can and have learned a lot from our therapists, but she needs a lot of therapy that Infants and Toddlers just can't provide because of the parent-training model.  There is a likelihood that she will go to kki for intensive therapy to gain back some of the skills she lost.  We won't know how long or whether she will be inpatient until the eval is Done.  I'm hoping for outpatient so that she can stay at rmh.  That's therapy in itself!

I was fairly frustrated with the surgeon, who has minimized my concerns and is telling me she is fine.  He thinks she's just tired and drugged up, except that she has come home on more meds than this and has NEVER had any issues like this.  He actually commented that she's not having apnea, so he calls this a success.  I disagree and have told him as much!  I let him know that I don't feel like he is listening to me and that this is not the child I came in with. (I was, of course, crying by this time!)  His reply was that he's not here to cry with me--he's here to operate on my kid.  

Yes, seriously.

However, he did write the order for the kki eval...whether it was to shut me up or whatever, I'm happy about that.  The bedside manner needs some work!

Chances are, we will not be coming home on Tuesday as planned.  If we move to kki, it probably will take a few days for insurance and paperwork to go through.  I'm hoping we are all under the same roof by Thanksgiving, but we are just taking it one day at a time.

For now, I plan to spend as much time as possible doing purposeful play with my girl so that we can gain back some skills.  And I'll be praying all the while that Abs wakes up and comes back to me.

4 comments:

Raelyn said...

Julie....
"There's still no talking and communication is slow, but at least she seems more conscious of what is going on around her. We still have times when she is far away. She is still very shaky, is very reluctant to use her arms, has no grip, and lacks trunk control. I am still moving her in and out of bed, she doesn't sit up well without support, can't pull up her pants or help get clothes on." Poor baby.... :-(
"For now, I plan to spend as much time as possible doing purposeful play with my girl so that we can gain back some skills. And I'll be praying all the while that Abs wakes up and comes back to me." Hugs, Friend!! ;)
Love you later, Raelyn

RicKim said...

We are praying sweet friends!! Please let us know if we can do anything to help!! We love you!!

gail said...

Some surgeons are fantastic, most surgeons have awful bedside manner...that's why they go into surgery. Report him and then move on but don't forget all the wonderful other doctors that you made contact with!

Raelyn said...

gail....
"Some surgeons are fantastic, most surgeons have awful bedside manner...that's why they go into surgery. Report him and then move on...."
While I usually do not reply other Reader's comments on people's Blogs, I feel I need to now. Years ago--when I was a birth defected, failure to thrive infant--one of my surgeons had poor bedside manner. However. This surgeon also SAVED MY LIFE!! To which I am eternally grateful. ;)
Love you later, Raelyn