It's been a busy and happy month for little Elodie! On November 3rd she had her IFSP evaluation. (An IFSP is a family service plan for children with developmental delays. It's essentially "special education" services prior to being school age, at which point you get an IEP.) Three interventionists came out for the evaluation and went over my concerns. Primarily I worry about her consuming enough fluids and calories, being able to turn her head in all directions, lifting her head, and tracking things visually. They seemed to agree that these were all valid concerns. She was rated with a 25-32% gross motor delay, a mild adaptive delay (due to feeding concerns), and no delays in the areas of cognition, social-emotional, and communication. Of course, there is not a lot to go on in those areas so far, but she is meeting some important milestones like social smiling and cooing. Her interactions with me and others are very reciprocal. The interventionists all fell in love with her (and our dog who was begging for some serious attention throughout the entire evaluation), and it turns out the OT who was there has been assigned as her service provider. Elodie qualified for OT twice a month. We're thrilled that so far she's falling within the mild/moderate range. Remember how the doctors originally told us there was only a 5% chance of such an outcome? I'm a proud mommy!
The next big thing was Elodie's overnight pulse ox test to see if she still needed the oxygen. She set off those dang alarms so many times that night, and when we got the report from Apria in the mail, I thought for sure she'd be on oxygen until her 18th birthday. She had 74 "events" meaning that her blood oxygen level dipped below 89%. However, the pediatrician emailed about a week later and said things looked great. So we're done with the oxygen! She really is finally tubeless!!
And finally, the absolute biggest and best news of this month! On November 5th Elodie had a sedated MRI to check her blood clot. I absentmindedly scheduled it for a day that Noah can't go to preschool, so I had to drag the poor kid with us to The Children's Hospital. It was pretty awful because Elodie was not allowed to eat for 4 hours prior to the MRI due to the anesthesia. Of course they were running late so it really turned into 6 hours of fasting. Do you know how awful you feel as a mother when your little baby is crying and looking at you with a pleading "why won't you just feed me" look in her eyes? Seriously, it was miserable. After the procedure I met her in recovery while a hospital volunteer took Noah to an arts and crafts activity (no children allowed in recovery apparently). It was so sad to see her so loopy. They let me try to feed her, but she had zero coordination. The second they said it was ok, I strapped her in her car seat and hurried us all home where she finally got to eat. Poor girl. Our follow up appointment was on the 11th. Traffic and weather were absolutely terrible, and it didn't help that my washer fluid line was frozen, so I had to pull over several times to clear my windshield. However, the 4.5 hour trip (seriously!) back and forth was totally worth it. We learned the Elodie's blood clot is basically completely dissolved! Our home health nurse had met us there to change her catheter for the Lovenox shots, but instead she took it out for good. No more blood thinners! That means that Elodie is officially off of all the medications she came home with! I can't even describe how grateful we are to hear such amazing news!
And now for the usual monthly milestones.
- Elodie is wearing a combination of newborn and 3 month clothing. We graduated her to size one diapers about half way through her second month.
- She is currently weighing somewhere around 11 pounds according to our home scale. On average she's been gaining about 7-8oz per week.
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| Look at her grow! |
- She is still eating breastmilk fortified with formula to make it 30 calories. She eats five 3-4oz bottles per day.
- Elodie is a great sleeper. She sleeps through the night, going to bed around 9:00pm. I wake her for a feeding between 4:00-5:00am, and then she sleeps until about 8:00am. She takes excellent naps as well. Usually she goes down around 10:00-10:30 and sleeps for about 2 hours. Then she takes a late afternoon nap ranging from 1-2 hours. She takes one final short 30-45 minute nap in the evening around our dinner time.
- Elodie is a big smiler! She started somewhere around 8-9 weeks, but they really got convincing after the 9 week mark. Sometimes when I'm feeding her she gets distracted and wants to just look at me and smile. It's adorable, but usually I think, please just eat kid! She also loves to smile at daddy and big brother. She really is a pretty happy baby!
- She really started cooing and "talking" this month. I love when I'm holding her and she stares into my eyes and we start talking back and forth. It's heartmelting. At times it makes me really teary. The day we found out something might be wrong, just before we had the big ultrasound, we picked Noah up from my brother's place. When he saw me, he got a big smile and yelled out, "Mommy!" I got really emotional in that moment because I worried that maybe my baby was going to be extremely disabled and would never be able to share a moment like that with me. So the fact that Elodie coos at me really makes me happy. She definitely can show how much she loves me.
- Elodie discovered her hands this month. She doesn't look at them, but boy does she love to suck on them! Her ability to get them straight to her mouth without bonking herself in the face is improving, too. We have offered pacifiers on occasion, but she often spits them out right away and then seems frustrated that she can't get them back. I will be just fine without a pacifier addicted child!
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| Let me at those hands! |
- I feel like I've seen some improvement in her vision. She is starting to notice things that I shake in front of her. She also will slowly track toys and faces. When she looks at me, I feel like she's making better eye contact. Her ability to turn her head to the right is improving as well, and I wonder if the two issues have been a bit related. At this point, her OT and neurologist are both aware of my lingering visual concerns, so at least I feel like people are staying on top of it and will help me to advocate with my pediatrician and ophthalmologist.
- Speaking of her eyes, they remain a vivid blue. For now. We'll see what the future holds there.
Overall, I'm amazed at how "typical" she feels to me, and I am so grateful and thankful. We're truly blessed and take nothing for granted with her.
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| Oh how I love this sweet face! |
