12/07/09 - New Challenges

Dad took a day off to deal with things today. Everything finally caught up to him. One day won't be enough.

Yesterday is a bit of a blur right now. I'm not going to say much about yesterday other than we left the hospital very encouraged that Aiden could possibly be home around Christmas if he continues to do as well as he has. The night nurse was terrific.

As for today....

Nurse Practitioner stated this morning's chest xray looked good. Next one scheduled for Thursday and if all looks good they may close the case on the fluid buildup in his chest. Optimistic that issue has finally resolved itself to satisfaction of all doctors.

A meeting will be scheduled with all doctors and our selves to be sure all are up-to-date and on the same page. Everyone needs to be clear on assessments and expectations. Not sure when this will be scheduled but will be soon.

Occupational therapist is working on Aiden's motor skill and midline development. Tendancy to turn to his right and not his left. Not abnormal but an area to work on.

Aiden weighs 3 lbs 13 oz tonight.

Started normal feedings with mom last night. Did very well for the first time. Tonight, not so well. Kept falling asleep (normal).

Dad changed a poopy diaper! Go daddy! Mom's done a few so it was Dad's turn.

Had a few heart rate drops tonight. Expected but still scary.

Meeting with geneticist was scheduled for tomorrow morning @ 8am. However, when we arrived after shift change tonight, the geneticist was waiting for us. Hmmm....

The news....Ultrasound of Aiden's head on day 7 shows an arachnoid cyst (fluid sack) on his cerebellum. The significance is unknown at this time and an MRI will be done before Aiden comes home. Unknown significance and next step pending MRI results. Research on this suggests many great concerns. Research on this suggests many problems. This could self-absorb and not become an issue but only time will tell.

More news..................................Aiden has a chromosomal abnormality. Long short of it is he has a duplicate chromosome. What does this mean? It means it can't be fixed with duct tape. Doc truly does not know what this means (exactly) but usually would indicate some level or degree of delay. This could be gross or fine motor skills development, retardation (most common and likely), and/or other issues. Research chromosome 6 (q23.3q25.1) if you want. It is associated with many challenges but varies depending on the exact sequence of the nomenclature. Mom does not want me to list the most familiar challenges associated with Chromosome 6, especially since the exact mapping can inflluence things a bit. Doc is going to follow Aiden's progress in the coming months and years, up to age 2 at least. Doc does not want to speculate or discuss hypothesis unless we insist. Feels it would not change anything and wants everyone to remain optimistic. Stated that a duplicate is better than a missing one, but neither is desirable.

Mom and Dad have to get blood work done so labs can try to determine what happened.

What is known........the challenge just became greater and more life choices and adjustments are coming. We just don't know exactly what this means yet. We will do what is necessary to ensure his quality of life and care. We embrace the opportunity to care for Aiden as best we can. Each day is a blessing and we are thankful for your prayers and support.

Dad is a mess. Mom is doing her best to remain strong and optimistic. Dad is hopeful but knows chromosomes are permanent. This will not be going away. Best hope, short of another miracle, is for limited influence and occurrence in Aiden's life.

Keep praying....

Posted by: Dad