Wednesday, November 12, 2008

Talking it up

Alyssa moved into her big girl bed~the bassinet. We had a make shift bed on her changing table that worked well due to her size and needs. Now though she is bigger and moving and we need sides so she doesn't take a tumble. She seems to like her new digs~ and we've had a continuous feeding pump for a week now!! The feeding pump slowly feeds her through out the night eliminating my having to get up and do our hour routine. I still need to check on her but it cuts down our routine barring any problems to about 15-20 min. The feeding pump is working out well. It is a little unnerving that she sleeps so well.

Alyssa is back on Hospice, with a new provider that seems better equipped or in tune with the needs of an infant. We were given oxygen in the event of an apnea episode or as needed. So far no recorded apnea events! Yeah. We had hoped never to use the oxygen but over the last few weeks have used a few times when it seemed like Alyssa's breathing seemed..chunky. This generally happened after a temperature drop, it just seemed like her breathing was more labored. We figure it can't hurt right to have a little more O2 to the brain right?

It is this new hospice provider that ordered the oxygen and the feeding pump once determining our needs. This provider seems more proactive in helping us identify what are needs are and identifying things that could be helpful for us. The other seemed to want us to tell them, but that's hard when this is your first dance~ya' know. I had only heard of the feeding pump a few weeks ago when reading Magdalena's blog (she is a few weeks younger than Alyssa.)

Here's a frustration..during these many initial evaluations most doctors preface before fully reviewing an issue or examining my child with a sentence something like "what brings you here...?" I say "we want to evaluate Alyssa's..." They say" you do realize that she has Trisomy 18, and you are aware of the outcomes..." I nod thinking "DUH!!!" then reply "yes" and smile. Not a real smile, not a warm and welcoming smile, more like a smile that says "if I weren't smiling right now I'd be chewing your ear off with a host of not so nice comments and possibly would be using your tie (or collar in the case of a female doctor) to floss my teeth when I am through. Instead I follow with a sigh, and attempt to release some tension with a good natured quip; reminding myself why it is important to keep a tame tongue (James 3).

It bothers me greatly that doctors feel the need to preface before treating Alyssa that she has T18. I understand that T18 is part of her make up and certain health issues arise b/c of it. Some health issues will not be caused by T18 or if it is some things can be treated.

I'm getting frustrated just writing daughter is a baby first not a diagnosis. My daughter deserves to be looked at as a whole person. If you have arthritis and then a joint needs to be replaced. Should you not replace the joint b/c you have arthritis and that could be the cause of the joint deterioration. Never mind that you are in pain or can't use that joint well, big deal you know you have's equally frustrating to talk about Alyssa to a doctor and they compare her to other babies her age versus looking at her in the framework of Trisomy 18. I know this sounds contradictory to what I just said.

I mean that, YES I do know a 3 month old should weigh more than 7lbs. However in the world of Trisomy and for Alyssa specifically she had done wonders in the weight department. It is not helpful to correct me during an exam repeatedly to say that she is small or in less than the 5th %tile for growth,when I show a glimmer of joy in my daughters ability to thrive.

It is understood that if she were on the typical path, she would be bigger, able to hold her head up well on her own etc. and etc.. However we got off the typical path on 7/15/08 about 1am in the morning! We are trekking a new path and while there have been others before us on this alternate route stones have been left unturned and we are willing to kick them up in hopes that our girl will see the dawn of a new day (over and over again).

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