Given that Ella was at such a high risk for having developmental delays that wasn't good enough for me. I worked with the NICU social worker to get therapy arranged for home. But I digress.
When the ECI coordinator asked me what goals I wanted to write up for Ella I really had a hard time with that. What are my goals for her? To be healthy and develop just like any other child! Other parents don't have to write this stuff down as goals.
- During mealtime, Ella will take all of her food by mouth
- During playtime, Ella will show interest in her toys
- During playtime, Ella will enjoy participating with others and independently reach & play with her toys
Much of this stems from my ongoing denial about Ella's special needs, since that day in the Emergency Room when the doctors & nurses tried to reassure me that having a baby at 25 weeks, usually the worst case is they have Cerebral Palsey. Well, first of all, I was too drugged up and didn't have my phone or computer to research more about this wonderful worst case scenario they were trying to sell me on for the baby I had expected to be full-term and healthy until that moment. More about this when I finally write Ella's birth story in detail, another post I have not been able to bring myself to write yet (either due to time or emotional capacity to deal with it).
Most parents can't imagine writing such goals for their baby as I listed above. I mean, that just comes naturally. People don't really think about it consciously, I don't imagine (I can't say for sure since I don't have another frame of reference). Of course parents support their children in learning to do these things and celebrate their accomplishments, but they don't have to consciously think of these things as goals and write them down.
And work with therapists multiple times a week to get there...
Ella has a very good team of therapists assembled now. We had to weed through a couple for certain specialties but I like her team now. Her PT & OT have been with us since we were discharged in September.
This might be a good time to clear the air.
Therapy is not fun. It is work. E
lla used to cry through all of her sessions. After her line was removed she began to tolerate therapy more, but still had a limit of how much she could take.
And at 14 months old (this Sunday), she still dislikes tummy time. She cries through commando crawling. Sidelying is a form of torture.
But she is making progress. It is slow progress. I am so proud of her, she works so hard every day!
I came to a point of acceptance some time ago that I am happy with her doing things in her own time because I know she will get there and that it's the right way for her. She still has to work hard for it, but she can get there in her own time.
That doesn't mean it's not hard for mommy too sometimes. I feel it more now that we are able to get out into the world and socialize with others.
At a playdate I'm the one who still has to hold my 14 month old on my lap while younger kids are sitting on their own, crawling and running around. At Kindermusic or Swim Lesson, my daughter is the one who is over-stimulated and clinging to me, crying through the session.
And why can't I get through making a matter-of-fact statement to my Financial Advisor that we need to take into account in planning that my daughter may have long-term special needs without feeling that shimmer of tears gloss over my eyes?
I am so happy! And I am so proud of Ella! But I do feel occasional pangs of jealousy toward parents who don't have to give these things a second thought. And that they don't have to write goals for their little ones to eat, reach, grab, show interest in toys, sit independently, crawl, walk, talk... and the many unknowns to come.
Jen, this video is for you... working on sitting independently is NOT fun sometimes.
|Rice - sensory play with OT. And outdoors! Mommy just wanted to make sure I didn't eat the rice.|
|Hands & Knees - Hard work.|
Hands & knees practice in PT
|Grandma watching work on the ball with a PT/OT Co-treatment session|
|Distraction during PT|
OMEGAVEN ON ROCK CENTER FRIDAY NIGHT
It's ironic that at the end of this post I am switching gears to something I am so thankful for in regards to Ella's current state. You see, as much as I express my feelings of frustration and jealousy above, I know things could have been very different. If it were not for this wonderful drug Ella may not have survived or would likely be doing extremely poorly and on a transplant list for a new liver and intestines.
Last June, Ella's direct biliruben levels had peaked at 11.1 (normal should be under 0.2), meaning her liver function was being severely compromised due to the IV ongoing nutritional support (TPN). Right before Ella's 2nd surgery her doctors told me about Omegaven. It is a lipid (fat) made from fish oil rather than plant oil that has shown amazing results in babies with liver disfunction. It is not an FDA approved drug. Our hospital had used it on occasion for other babies and knew how to file the paperwork. It took about 3 weeks for FDA approval to come through so they were able to begin administering Omegaven to Ella in late July.
If you recall, one of the primary reasons we had to wait on discharge from NICU was that since Ella was going home on TPN, paperwork had to be resumitted to the FDA for approval to use it OUTPATIENT. Oh, the hoops that have to be jumped through... well, after 2 weeks of waiting for a response from the FDA we learned that the paperwork had been sitting on the wrong desk at the FDA and it was being resubmitted AGAIN to the right area. At the same time there was an Omegaven shortage and Ella would have to switch back to lipids while the Omegaven was unavailable.
That's when the NICU doctors and I talked again. Ella's direct bili had dropped so significantly to 1.7, she really didn't need lipids (fats) at all, not the standard lipids or Omegaven. While Omegaven at home could have benefited her, the fact that she didn't need regular lipids anymore meant that it wouldn't be inflicting additional damage on her liver. This is when we put in place the very sudden discharge plan for Ella. Yay!
Ella's direct bili continued to drop after coming home on TPN without lipids. By December she was under the normal threshhold! And I credit Omegaven for that... and so much more.
Check out the story on the controversy of why the FDA has not approved Omegaven on Rock Center tomorrow night. I am so thankful Ella was able to get it, hoops and all. Like Dr. Puder says, how can you tell a parent so desperate to save their child that they may be in the "control" group of the study and not get the drug that has already proven to help so many?