Wow, I’ve not posted in almost a year!!! And there are a few faithfuls out there who ask me from time to time to do it! Thank you faithful blog reading friends!! You, have inspired me.
Okay, the last post was…well….depressing! Ha! Where to start…..
Let’s start with; Haddie Joy is adorable..still. She is happy. She is my heart, rolling around on the floor, acting all innocent and naive, but really is deceptively clever. She doesn’t say words, but oh does she ever speak a language uniquely her own. It’s a language that goes down deep. You know, that Joy kind.
It’s the language that speaks to those places of depression, fear, and anxiety. It’s light in darkness. It’s fight in sickness. It’s a quiet smile in waiting.
Ah, the waiting. Sometimes, I feel like we LIVE in a waiting room.
But that language, you know that Joy kind. It’s there too. Thing is, you just can’t snuff out that Joy language. It sort of attaches itself to all things life. It breathes. From time to time, it giggles. But mostly, it perseveres through waiting room woes and blood drawing blunders; sometimes with that infamous side ways grin, sometimes with a good ole’ fashioned “fight song” – nonetheless, there it is.
She is doing very well. She has just shaken (from what they can tell) a virus that made her white blood cell count go way down as well as lower her platelets and a few other things. But all is looking much better. It gave us a bit of a jolt last week since she has never had an issue with these things, but her demeanor matches the bloodwork, so we all feel good about her staying clear from trouble there.
She is still not eating with her mouth and is 100% tube fed. BUT she has successfully been transferred from mommy’s milk to a formula/medical food WITH DAIRY (YAY!) for several months now and has been tolerating it beautifully! She is now only taking 4 meals a day. Mommy is actually cooking decent meals for supper again! Woot!
She has made a tremendous step in the last week in a half by accepting (somewhat consistently) drops of water from a spoon. She actually opens her mouth and accepts it. I can not describe what an exuberant rush I get to see her enjoy tiny drops of water. It rocks.
She rolls, and is making new moves on her belly. She just in the last few days started trying to move her lower body weight around in this position, making us think she is trying to start a crawling type of movement. This is so cool to watch!
She can stay in a sit up position and enjoy her toys. She is doing much better with different textures. She is still working on the sitting up on her own (from floor to sitting), but I think with a little more effort, she could pull it off soon!
She loves people and going places, although we still have to be careful not to over expose her to lots of little ones and germs.
She has been swimming a few times this summer and absolutely LOVES it!
Medically she does still have some major concerns. The main three things going right now are; kidney disease (yet to be named), primary congenital lymphedema, and obviously, her nutrition.
The lymphedema is managed by a pediatric physical therapist certified specifically to implement a treatment program designed for Primary Congenital Lymphedema (LE). At this point in time, it can only be managed. There are not many doctors who know a lot about lymphedema clinically, at least the type Haddie Joy has. We were able to connect with a group of parents, who in turn helped us connect with a team at Cincinnati Children’s Hospital who are experienced with treating LE clinically. (IF you stumbled across this blog looking for help about lymphedema, PLEASE feel free to contact me @ firstname.lastname@example.org)
This team is working with Nephrology (kidney docs) closely and will be accepting Haddie girl as a patient in just a few short weeks, to perform a kidney biopsy. We have tried to avoid it, but it’s just the next step that must take place. Haddie is high risk, and the team has never actually done a kidney biopsy on a child with congenital lymphedema. They will determine via imaging and clotting studies if it can be done safely, and if so, it’s a go. The purpose of the biopsy is to 1) find a diagnosis, 2) get a prognosis and 3) pinpoint the best treatment options for the likely significant damage they expect to find.
Haddie Joy is stronger than she ever has been. The team has been phenomenal to work with thus far. We are very relieved to have finally found the right network of doctors for Haddie’s most pressing needs at this time. This is an answer to many, many prayers. We have full confidence in the providers, and mostly, we have full confidence in our God!
I will be honest. Joy has needs. Lots of em’.
I love that.
Joy has a way of growing.