Just the Facts

Wednesday, April 23, 2014

 Dr. Graham speaking sweetly to Everly who is all ears

It feels like so much--and it has--has changed in the past month. I thought I would take this journal entry to update everyone on where Everly is today.


62 days old 6 lbs 9 oz 19 inches long 50 ml of milk (with extra fortification) every 3 hrs around the clock


GI: They are taking care of maintaining her feedings, extra calories and overall nutrition. Right now we are trying to help her become more "regular" so her tummy doesn't hurt. We are also waiting for the go ahead to have the G Tube placed in her abdomen for feeding in place of the NG tube (nasal tube). Not happy about the procedure just because it is a procedure but it is the best decision for her based on her GI and Pediatrician's recommendation and we agree. Many factors played a role in our decision to do it but a few of them include: reduced risk of milk getting into her lungs, reduction (hopefully) in her reflux which causes desat's and aspiration, increased ability to learn to oral feed with nasal tube removed. Those are only 3 reasons but tremendously important ones.

PEDIATRICIAN: We have a new one! We are thrilled to now be seeing one consistent doctor who adores Everly! I must give a shout out to her, Dr. Graham at Healthpoint Medical in Westchase, because she was literally an answer to a prayer. As of late, my prayers have been for clarity in decision making and discernment and compassion on the part of the doctors caring for Everly. And just like that, in a true moment of clarity, it occurred to me that I should contact Dr. Graham who I had met prenatally in January. At that time, I thought we were only dealing with Congenital Heart defects and she agreed to see her even still. But with our new diagnosis, I was not sure so I put a call to her office and within a couple of hours she (yes, the dr!!) actually called me personally. After explaining our situation, she told me that she had cared for babies up north with T18 prior and that she "would love to care for our Everly." Oh, what I would have given to record that statement! This past Monday was our first visit with her and our sweet pea received her first head to toe full and complete newborn check up. She finally was able to receive her vaccinations as well as get lots (and I do mean lots) of questions answered. She was in no rush to move us along and allowed us ample time to ask questions and fully answered them. The best part (really!) was that at the end of the exam she gave me and Everly a collective hug and whispered in my ear that "she is glad to be on this journey with us." I'm not kidding! God really orchestrated this one perfectly because she was exactly what the doctor ordered (pun intended)!

Her 2nd month birthday dress and her Easter dress as they were the same day

CARDIO: Everly's last monthly Echo and EKG were both "good" according to the doctor. She is due for another repeat test of both May 12th. We are currently in prayer for either the doctor to open her mind and her heart in caring for Everly or for another cardio group who will. We invite you to be in prayer for this as well.

PULMONOLOGIST: Left the St. Joe's area for this one and headed across the Bay on a recommendation to see Dr. Kriesman at All Children's Hospital. Good call! Not too much at the moment that he can do for her, but he did recommend a sleep study for her to determine if she has central apnea alone or obstructive apnea in addition. We would also learn if she's holding CO2 in as well (remember that time I picked her up limp shortly after we got home...we suspect that to be the culprit). So, we'll see about this study.

Nana with her little baby girl

THERAPY: The best part of the week! Everly began speech therapy (aka feed therapy in babies) last week at All Children's Outpatient in Palm Harbor. Love, love! Ms. Kay is our therapist and works so well with Everly. We are just beginning so we have a bit of a road ahead of us but keep in mind that Everly doesn't take any milk by mouth yet. She only has taken literally a few drops over the past couple of weeks. The reason it's important for us to do this is so that when the time comes to introduce any baby food, she will have already experienced the sensation of swallowing "food" and the varying tastes, temperatures and textures to some extent. Without that, introducing anything else will be more challenging. At the same complex, Everly also received a physical therapy evaluation last week. However, she did so well that the evaluation turned into an impromptu therapy session. Go girl! That was so fun to watch! I wish the family could have been there because I learned so much during that hour. So, she will now be receiving speech therapy twice a week for 1/2 hour and physical therapy once a week for an hour. Those will be fun appointments!

It's hard work being that cute!

In addition, we were notified yesterday that we have been assigned an Interventionist Therapist to work with Everly. As it turns out, she lives in our neighborhood and is a pediatric RN. The best part of the whole thing is that she's been following Everly's updates and progress and praying for her already prior to her being "assigned" Everly as a patient. God knows what He's doing, doesn't he?

ODDS & ENDS: We continue to be advised by each of her doctors to keep her from enclosed places or large close gatherings. As hard as that continues to be, we do so knowing it's in the best interest of Everly. A simple cold her for her can turn serious quickly. Everly herself is so much fun to be with everyday. She has the cutest facial expressions and while she can't speak, her face can!She has a pretty consistent daily routine that I can tell she recognizes. Ala (our dog) continues to help me mother Everly even killing a bird and bringing it to the foot of the crib on day. Spent her 2nd birthday at Philipe Park in Safety Harbor with family. Celebrated with a cake and a gift. As for the rest of the family, I'll give you a bit of an update on us as well.

SPIRITUAL: The boys have been able to attend church on Sundays thanks to my parents coming by and picking them up. I am able to watch the same service live online from the safety of the house with the baby. I've also DVR'd a gazillion Joyce Meyers Ministry and Joel Osteen episodes so I catch one of those an evening or two a week while feeding Everly (takes 45 min every 3 hours).

PHYSICAL: Well, since our YMCA days are on hold, I knew we needed some movement. I have heard about the power of P90X for years now and decided it would probably be the best thing for us. So after a bit of research settled on P90X3 and figured we all could get something out of it. I knew it would be hard (only to find out after we started that hard is putting it mildly) but also knew there would be modification options on screen. We are now on Day 7 and we love it! It's such a great physical release not to mention a morale booster. Even Garren is excited and I no longer have to prod him to get dressed for a workout. We continue to do our nightly walks with sweet pea and our 2.2 mile hikes nearby but those don't count for our exercise really.

SOCIAL: The boys have both been fortunate to have opportunities most weeks to fellowship with friends both at our homeschool co-op and on outings. Garren even had his two closest friends spend the night recently for his birthday. I have also just begun feeling able to entertain the thought of getting together with friends (with Everly in tow, of course). Thankful for friends who have been patient with me over the past 8 weeks. It's been nice to get spend time away from the house, outside and with the boys and Everly AND with friends! It's a win-win all the way around. Feel free to get a hold of me if you'd like to get together :-) Jimmy isn't as social as the boys and I are so he's content to have free time at home while I'm out visiting with the kiddos. I guess it's a win-win for him, too. :-)

SCHOOL: All I can say is thank God I had all my lesson plans complete prior to giving birth! That has made everything SO much easier and I'm not sure we would be doing school had I not done that ahead of time. I planned out Garren's year last July and Kendan's shortly after that. Then spent the summer and last fall copying and filing lapbooks, papers and units for the school year. So, I'm glad to say that some progress has been made in the past 8 weeks. However, we will be spending this summer catching up on a few things. With all her appointments, the mere worry of time the first 4 weeks and just the lost momentum with mom/teacher busy some, it's expected that we would need a bit of make up time. Glad we had that freedom to spend unlimited time with her at the beginning when we thought we needed it right then!

A morning hike with the Edgar family

I think that about wraps up all the facts and details that I know have been updated and changed since the last time I wrote about them. Thank you for all continuing to follow her story and her journey. I can't wait to see where God takes her and I'm thrilled you are along for the ride!

Please continue to share her story, her FB page and her website. So many do not know of Trisomy 18 and it's important to educate. Why? So that eventually medical providers won't discriminate or withhold treatment just because a label has been stamped on their medical record. Not everyone fits in a mold and only God knows His plans for her, not even the best doctor can tell us that. So, how can you help? By sharing this page and sharing her FB page. Let the world...everyone...see the face of Trisomy 18 and let them see that these sweet babies can thrive. Help Everly get the care she needs by transforming the hearts of the medical community and enlightening those (me included at one point) who do not know about Trisomy 18.

Please also pray for Everly's two friends Melanie and Elizabeth. Melanie who also has Trisomy 18 will be having a procedure done this Friday. Elizabeth was born 2 1/2 weeks ago and has Trisomy 18. I haven't heard how she's doing this week but last week she was home and doing well.

With love and appreciation,

Crystal Hopkins

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