Our baby is not a baby anymore!! She is a little girl!! It has been such a joy to see how Poppy has flourished in the last month, since her eye surgery!! God just continues to reveal His wondrous mercies. Almost immediately after her eye surgery, she began to grab objects with intention, interact more, and has even found a reason and a drive to want to roll over!! Her therapists as well as her doctors say they see a different girl before their eyes!! We couldn’t agree more!! Many many tears of joy have been shed in physical therapy in the past month, and it’s all Jesus!!! Our girl is now rolling over consistently and allowing us to help her bear weight on her legs and feet with full support without completely freaking out!!! These are HUGE things for Poppy!!! She is even starting to pull her knees to her chest while on her tummy, in attempt to move!!! I mean…she wants to move?!?!?!!!!! It’s incredible and tear worthy and ALL Jesus!!
We were in Seattle a few weeks ago for routine follow up appointments, and perhaps you can tell how they went by the single fact that they don’t want to see her for 3 MONTHS!!!!! This will be the LONGEST time between Seattle appointments that’s she’s ever had!!! While we enjoy seeing her providers-they are truly just like family…BUT we are OVERJOYED that we will have a 3 month break!! 🙂 Thank you Jesus!!!!
Poppy was fortunate enough to have scored a feeding evaluation with the Intensive Feeding Program, as well as a swallow study this trip! If you have a kid with a feeding tube, it is a BIG deal to get an evaluation with the Intensive Feeding Program at Seattle Children’s. This, was purely God-orchestrated…in every way Divine. In the evaluation, the social worker, the occupational therapist, the nutritionist, the pediatrician meet and watch your child eat, as well as take notes on everything about their feeding that you could imagine. If they feel the child and family are ready for the Intensive Feeding Program, they put you on a waiting list. They only do 2 kids per month, so you can imagine the wait list…. These providers were beyond amazing and ultimately very encouraging! They, for the most part, felt Poppy was ready for the program!! We were elated!! This program involves basically pulling the tube and seeing how they do hungry. For heart kids, this is tricky, as Poppy’s kidney’s already take a hit from her anti-rejection meds, so hydration is crucial for avoiding any degree of kidney failure, hence the close monitoring. They do frequent labs to check drug levels, kidney numbers, etc. The kids are monitored closely because most lose weight during the program, but most also come away from the 2 weeks either completely weaned or close to it. We have always felt this would probably be the way Poppy would come off her feeding tube! We are encouraged!! Her swallow study went ok. A swallow study is where the child is given different foods and drink under X-ray to see if the swallow is safe/ not causing aspiration. The great news was that Poppy is not aspirating when she swallows, meaning nothing is going into the lungs! Hallelujah, this is good!! This is HUGE!! However, we were able to see that she is using ‘protective’ instincts when she does swallow, and actually putting her tongue in the sippy cup spout, preventing much of anything to get into her mouth. Her oral skills were found to be ‘primitive.’ She’s really not sure what to do with her tongue and if she swallows, it’s really a surprise to her. This was even clear to me, as I observed the X-ray screen. So while she has a ‘safe’ swallow, it’s also protective in nature…which is good….but not great for the Intensive Feeding Program 😦 The facilitator of the swallow study was honestly great, but she’s nervous about Poppy’s ability to take in her daily volume by mouth-it just doesn’t seem as if she has the skills at this point. 😦 She did provide us with some thickening agents to add to her liquids in hopes of helping Poppy to become aware of liquids in her mouth and want to try to deal with/swallow them. Right now, on a good day, Poppy takes 1-2 oz. by mouth. To meet her daily total volume, she needs to be able to take 30 oz. by mouth, plus meds…..yah…it’s overwhelming.
Transplant cardiology was able to take her off of 2 of her meds!! Poppy is now off of Enalapril (blood pressure), and her Bactrim (antibiotic for just in case..) This leaves her on: cyclosporine (anti rejection), MMF (anti rejection), magnesium, keppra (anti seizure), ranitidine (zantac), and lactobacillus (probiotic)!!! I mean….I can’t believe it!!!! Hallelujah!! Dr. Albers thought she looked great!!! She truly does 🙂 Thank you Jesus!!! Next followup in Seattle is 3 MONTHS!!! She will see Dr. Hardy twice in the mean time, but this is HUGE!! 🙂
Neurodevelopmental seemed to agree. They said she’s likely a candidate for the program-they would like to see how she does once hunger is a factor, however did say that her oral skills may have everything to do with her neurological status. This was tough to hear, although maybe should have been obvious? They said that continued therapies, hard work at home, and time may be all she needs to develop these oral motor skills…or not. Her neurological status may not allow her to progress past this ‘primitive’ stage of oral feeding. Ugh….it’s like a punch to the gut. It’s like you never give up…NEVER….you always do the feeding therapy, you always work work work work on it at home, you are always searching for the perfect sippy cup that may make her want to drink, it’s like your life is consumed with trying to get her to eat/ sit, crawl, stand, reach, roll, etc…and you ALWAYS DO!!! YOU HAVE TO…YOU WANT TO…YOU HAVE TO BELIEVE IT WILL PAY OFF, BECAUSE IT JUST MAY…and God can do ANYTHING and we have seen that first hand countless times over!!! I’m in constant prayer over it numerous times a day!! But hearing this is hard. These doctors are hopeful and inspiring, and at the same time, they have seen a lot, and truly cannot predict the future, no one can, only God knows the future, and what a relief that is…these doctors are only able to give potential scenarios, and it’s their job to try to prepare us and help and encourage us and help to provide the resources we need as a family to best support our family and Poppy. Knowing where she’s at, will make seeing how far she’s come all the more apparent. Denial doesn’t do her any favors; denial doesn’t get her the services she needs. Hope in the Lord and belief in His perfect Will is what STILL gets us through.
They also threw 0ut the terms ‘dystonia’ and ‘cerebral palsy.’ She is too young to be formally diagnosed, as they typically do not diagnose cerebral palsy until at least 2 years old, but this is not the first time cerebral palsy has come up in conversation. Cerebral Palsy has really a broad range of severeness and many different types. It’s basically caused by a lack of oxygen to the brain anytime from birth- 2 years old. Definitely Poppy has had lack of oxygen to the brain, between her stroke and terribly sick heart, that left blood perfusion to her brain less than ideal. We have suspected it, and even though we have suspected it, it will ALWAYS be hard to hear. More challenges…she may have more challenges than the ‘typical’ kid….but maybe not…God can do anything….and we cling to that. God is here…He carries us.
We have really just been enjoying our summer together. It has been such a tremendous blessing to be able to spend time with family and out of the hospital!! It’s so easy to take it all for granted….last year during this time, Poppy was in and out of the hospital with multiple shunt malfunctions/revisions…and here we are a year later at home in MT!!! Simply glorious!! Thank you Jesus!! 🙂
It has been truly a gift to see her interact with Crosby. He treats her like any other kid and loves on her like a big brother would…it IS the sweetest thing, and the best thing for both of them. We could not have dreamed up the bond they share…it is truly priceless and daily makes us stop and rejoice. He is getting so big! Every day it seems he is talking more, ‘helping’ more, becoming such a big boy!! Hard to believe he will be 3 in November!! He is such our precious boy ❤ He is quite a guy 😉
Things really are good. Most days I’m truly taken back by the life the Lord has given me. The countless blessings and provisions He continues to deliver are daily, overwhelming. I never would have imagined my life this way. It is beyond the love and joy and wonder I could ever have dreamed. Even the tough days are deep and meaningful. Each day has it’s own challenges, but whose doesn’t? We cling to the Lord and wearily ask for His help countless times a day, but everyday we rejoice in these special times together…. God is sooo good. 🙂