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 this...my 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 arthritis..it'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).

Thinking Out Loud

We are blessed that the Hospice nurse that leads the "team" that Alyssa is on, lives locally and knows about having a child with disability first hand. She along with our EI nurse-she too is an experienced special needs parent-have been so helpful in planning preparing and understanding all of this. Very helpful. In the last two weeks I've spoken with 2 families from this area with daughters that have T18. The first being this area's S.O.F.T. organization's (www.trisomy.org) contact person. Her daughter is 22 years old! I literally cried when I heard that, as when I called her I had no idea if her child was living. The second family has a little girl that is nearly 6 years old.

In speaking with them,The thankfulness that I have Ed to rely on was stirred up again. In my conversations with Kathy from S.O.F.T. , she mentioned many dad's hit the high road when their child is born with a diagnosis such as this or they become detached and never "bond" with the child. I am very fortunate not to have experienced either situation. Ed is a good and loving father to all of our kids. In fact he is very kind and attentive to most kids. He's the dad that goes and plays and gets yelled at almost as much as kids for playing.

Alyssa's arrival posed a new challenge and he has stepped up. He is interested and attentive to Alyssa's needs. As needed he willingly comes to appointments. I say willingly because he could come and just sit there like a bump on the log but instead he is interactive and a good listener. To see him engage doctors, thoughtfully write out or think up questions on the fly tells me how invested he is in our daughter and her welfare. It is a real help to me and a comfort. Not that I would have expected otherwise but sometimes it's easy to take such things for granted; that he'd be here. He is wrapped around this little girls finger; hard to imagine cause Jessica has him wrapped pretty tight too! I am though thankful that he picks up the slack in addition to working. I am thankful for each day we have Alyssa in our lives and for the way generous support and normalcy of life has formed together well for us since her diagnosis. I recognize how fortunate we are and sincerely have tried to express appreciation for all this each day.

There are frustrations though that come along and when I share them please know that it is not my intent to complain rather I'm just trying to process things and figure out how best to handle all that is placed in front of us...I had asked a mom of another sick child how to manage my doctors appointments for Alyssa. Emotionally as well as practically. A key piece of advice was to remind doctors that our daughter deserves dignity and quality in her life for however long she is here. I often battle with myself to be my daughters mother, yes a mother who can advocate for her girl but a mother. As a former Advocate/Social worker it is very tempting to want to take on that role in Alyssa's life ~ you know present my daughter as a case vs. my child. She has though a wonderful nurse Case Manager and other capable professionals to help us deal with the medical pieces and balancing the doctors. Alyssa needs a mom she only has 1 of those. Like many pieces of this puzzle it's all a balancing act I can't be too sensitive by the observations of or the findings that the doctors have. I have to present our concerns for Alyssa with confidence and a willingness to be firm in what we know to be true while accepting that each step is a learning experience too. It's a step by step process.

We all have trials, disappointments, or illnesses to deal with in the mix of all the good things in life. So if for no other reason than to communicate hope in an otherwise sad situation I thank you God for all that is good in our lives. Every day it seems a question is posed about how to proceed in one area in her life or another. Wisdom to know what to do and when is constantly needed...Everyone, should be quick to listen,slow to speak, and slow to become angry. James 1:19