April 5, 2005:  Theresa had another appointment at the Texas Children's NeoGraduate Clinic.  The doctor looked at how much weight she has gained since birth (over 5 pounds!) and proclaimed her "FAT!"  I think he was actually a little concerned over this, because he questioned me on it (I just feed her the amount prescribed by the doctors when we left the NICU and she wasn't gaining any weight), and showed me how she had jumped growth curves.  At first, I was a little proud over how much she has gained since getting off of ECMO and the fact that the doctors in the NICU were always concerned that she WASN'T gaining weight, but he made me a bit nervous over it.  I think she looks fine, but I'll call our ECI case coordinator in the morning to schedule a visit with the nutrionist and see what they think.

 

Otherwise, all is well, and she is doing fine.

 

April 6, 2005:  I contacted ECI yesterday, and the nutrionist scheduled a home visit for Friday of this week.  She doesn't seem too concerned, but will come look at her, see what she thinks, and perhaps make some minor changes to her diet (we do fortify the milk with a high-calorie formula). 

 

Theresa's ECI occupational/physical therapist, Joyce, came to the house today, and Theresa cooperated so well with her therapy, that she stayed nearly twice as long as she predicted she could!  We have LOTS of stretches, massages, and "therapies" to do with Theresa daily when the therapist isn't here (she'll return each week).  Theresa seems to enjoy them, and lots of them are simply positioning her so she'll have to use her neck muscles to look around more, or playing with her hands and feet, massaging her legs, arms, gums, and cheeks, etc.  She is receiving therapy for oral/motor skills (so she can one day drink from a bottle regularly), legs and arms mucles (she is hypertonic and hyperreflexive, which basically means those muscles are "tight") and for her neck (so she can start to hold her head up and turn to the right side more, since being on ECMO affected this range of motion).  She is doing better each day, and acts as though her therapy is a game, so I think she'll continue to improve.

 

April 7, 2005:  My nephew, Caleb, was admitted to the local hospital with severe abdominal pains.  They believe it is appendicitis.

 

Theresa is doing well.

 

April 8, 2005:  The nutrionist from ECI, Sharon, came to the house today and looked Theresa over.  She didn't think that her weight gain was too significant, and told me not to worry because she could possilby lose weight after the surgery, so any changes should be made then, and not before.  She will continue to monitor Theresa's weight and nutrition twice a month after her surgery and recovery are complete.

 

We were back at Texas Children's today for an appointment with her surgeon before she undergoes surgery.  He thought that her weight was fine, too (so I am FINALLY convinced not too dwell on it anymore), but that he didn't see a problem reducing the concentration of formuala to milk.  I will wait until after the surgery because I don't want to change anything right before she has a new procedure.

Everything is still on schedule for April 15th.   Originally, he thought that he might do some cosmetic work on her existing scar because it is puckered in three places where the knots were tied, and where the skin has had to stretch more.  Although it looks better than the last time he saw her (in some places it's practically invisible!)  Now, he has decided against working on this scar, because her skin isn't quite loose enough, and more stretching may make it worse.  If it doesn't improve in the next year or so, we can do something then if it is bothering us too much. 

They did take a chest x-ray to make sure that all is well before proceeding with the surgery.  I assume we will hear something if there is a problem.  I am curious, though, as to how much (if at all) her lungs have grown since the last one.  It is probably too soon to tell, but I would love to know anyway!!!

 

(Caleb had an emergency appendectomy in the middle of the night, but it turns out that it WASN'T appendicitis, it is pneumonia.  Please pray for him, as the surgical incision makes it hard to breathe deeply and get rid of the congestion.)

 

April 9, 2005:  Just a nice Saturday at home.  Theresa is still doing great.

 

April 10, 2005:  I took Theresa for her 3 month photo tomorrow (1 day early, but Tim was able to watch Nathaniel).  She wasn't happy at all about having it taken, but was all smiles as soon as it was over!!!

 

A couple of friends visited for awhile today.  We haven't seen them in a long time, and tried to cram as much into the visit as we could (I think we frightened them off!)  ;)

 

April 11, 2005:  Everyone is doing well.  (Caleb went home last night)