Tuesday, November 23, 2010

Doing it for myself (9 weeks)

Eslea is 9 weeks old today. I am tired of seeing doctors. I'm tired of all their opinions and prescriptions.
The fact is, most of what has helped buggie is due to the research Jason and I alone have done.

Three weeks ago, Eslea was admitted to the hospital because of poor weight gain and dehydration. Things that could have been prevented if just one of the three doctors that saw her would have made the correct diagnosis.
Eslea is getting better. She is getting stronger and bigger everyday. At her most recent doctor visit she weighed 9lbs 4 oz and is over 22 inches long. She continues to be happy and very active. With the exception of the cardiologist, I am giving Jason and I credit for this improvement.
I have spent hours researching and asking questions so that I can make the best choice possible for Eslea. When we were told to give her formula for half her feedings, we did. When we were told to make sure that formula was more condensed so that it had a higher calorie count, we did. When she started to have very wet stools for days on end and we were told to increase the formula, we did. When we were told to admit her to the hospital, we did.
Yet, now, we question everything. During the hospital visit we were told to stop breastfeeding and go to all formula.  We did not. We were told to continue using the same formula, we did not.
We have made our own path now for Eslea and we are starting to see a difference.
Because of that, my new goal is to share everything I learn with anyone that wants to hear it.
I'm going to use every bit of information I obtain from my graduate degrees along with my quest for the latest research to find the best possible treatments, therapies, prescriptions, doctors, etc for my child. And I don't plan on keeping that news to myself.

Now excuse me while I hop off this soap box I'm on...because...if you didn't notice earlier in the mist of my ranting I posted that ESLEA HAS GAINED WEIGHT! Yes, I'm yelling it! At the top of my lungs and from the roof tops!

The very first "things we love" to be added: 

Wait for it.....

Now, before you start thinking "breast is best" and that I'm being a sell out , let me say one thing....I know! But the fact is, my Eslea does need more calories per ounce than I can humanly produce. So, I do continue to nurse her for half of her feedings. But for the other half, we use Soy Formula. It is working and she is finally gaining weight. After many hours of research and talking to a few experts, I have found that there is a theory that almost all children born with down syndrome are lactose intolerant. Frankly, I believe this theory. Since she has been on Soy Formula, she is less gassy, less crampy and she is gaining weight. So, I stand by our decision to use formula. It is working!

Today's therapy:
We spent a lot of time outside the house today, so in addition to the activities I do daily....

1)Patterns: Sing Along
This is when I help Eslea recognize patterns through music. Recognizing patterns is essential for brain development in infancy. While in the car today there was one song I played over and over again. Yet, each time it was presented to Eslea differently. One time, the song was played exactly like it is on the DVD. The second time, her older sister sang along with the song (very loudly). The third time we clapped along with the song. The last time we played the song again in it's original form. Eslea was alert the entire time and engaged.

2) Visual and Tactile: Leaves
While at the park today, I made good use of the time Eslea was awake. I found a variety of leaves in various colors and presented them to her one at a time while saying "leaf". I than allowed her to touch the leaves and waited patiently as she attempted to raise her right arm in an attempt to grab the pretty colors.

3) Visual and Auditory: Children Playing
The park is the perfect place to stimulate those little ears of hers. I spent the few minutes of attention I had left with her telling her about her surroundings. Whenever a child came into her viewing range, I would let her know if the person was a boy or girl. If a child yelled or laughed, I would make sure to point out the sound to her and repeat it myself.

Yes, it was a busy day.

(Ummm excuse this picks below. I actually walked out of the house without my Canon. All I had handy at the park today was the camera on my phone. I know, right?)


  1. Moms know best!! Seriously, the number of times I've heard the parents of children with Ds say that they taught the physicians a thing or two is countless. Do you have a geneticist? That's one doctor whose opinion I trust more...the one that generally specializes in genetic issues, like Ds. A very valuable specialist to add to your team (our geneticist and our cardiologist are my two most-relied-upon), if you can find one and get an appointment (don't wait - sometimes you'll have to wait upwards of 6 months for an appointment...).

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  3. Hi! I have been searching for a geneticist fairly close by...if I can find one. The closest is about 3 hrs away in Atlanta. But I'm gonna keep on lookin'. Thanks for the suggestion. My areas are in clinical psychology, cognitive development and child development. I have no clue when it comes to medical or genetic issues. All the suggestions and advice are greatly appreciated. :) Hope you have a great Holiday!
    - erin

  4. We're thinking about trying to find a different pedi for j...for those reasons. I feel like I'm telling her all the things that are wrong with him and she's like, "ohhh, silly. no way." wtf lady, do your job! lol.