Luke's team started with his Primary Care Physician, who referred him to a couple more people, who each referred him to a couple more people, who referred him to a couple more people. We have a binder that we take to Luke's appointments, and one of the "pages" is actually a 10 slot business card holder to keep track of Lukey's specialists and therapists. I think we're going to need another page pretty soon. We're already doubling up the cards back to back to use both sides.
This week, Luke had his appointment at PM&R (to which he was referred by his physical therapist), and the Physical Medicine and Rehabilitation folks want him to see... a couple more people. Namely, the neuromuscular doc at Shriners, and a pediatric ophthalmologist.
I've mentioned the blotchy patches in Luke's eyes to doctors, but they mostly just shrugged and moved on to other issues. However, when Paul took Luke to see the geneticist at UCSF in February, they looked at his eyes and said, "Copper poisoning?" Well, the bloodwork is in, and his copper levels are fine. It's not copper poisoning, so his PM&R folks want to send him to an eye specialist to see what it might be.
Hannah and Katie are patients at Shriners, but not in the neuromuscular department, so I'm not sure what to expect there.
I spent this morning on the phone with the school district nurse, who wanted to do an intake interview prior to Luke's IEP, which is tomorrow. I'm pushing for speech therapy, occupational therapy, and physical therapy once a week and feeding therapy (the only area he's made progress in) twice a month. We'll see what we get.
This Friday, Luke gets his first wheelchair. Wednesday, he goes back to the GI Doc. At Monday's appointment, he had gained 3# from the visit when he was diagnosed Failure To Thrive, so I'm hopeful that they'll be pleased with that. The GI Doc prescribed PediaSure, but our insurance won't cover OTC items, so Luke's been drinking the generic Costco version. It does unpleasant things to his diapers, though, so we've tapered back a bit from the 2/day suggested.
Next Friday, he goes back to the neurologist, who is the guy in charge of trying to diagnose Luke. We'll be talking about his increased seizure activity, and getting the rest of his lab results.
One commenter recently suggested that we stop with all the appointments and just love him. I feel that pursuing a diagnosis and getting him the best medical care possible and advocating for him is a form of love.
Could he have issues with dairy? My daughter tested negative to dairy allergy (which I later read can happen and is common) but ended up hospitalized because of dairy. We tried pedisure because she was not gaining (for over a year) and ended up with issues because it is for lactose intolorent children but not dairy free children. Maybe soy? There's a powdered "formula" that is essentially soy pedisure
ReplyDeleteIt's possible dairy is a concern for him. Many Chinese people have issues with dairy, as it's not common in their diet.
DeleteLOVE them? Ok, well we should tell the foolish lady to go love EVERYONE out of their issues! I guess this is why divorce is rampant and the world has ZERO problems! God says to love, HE loves and we still ARE sinners, still disobey, still ended up, by our own decisions, cast out of Eden. Seriously, love is wonderful but it isn't completely the answer! God IS the answer, but until we get into our perfect home, in our perfect paradise WITH God, life is going to be good, bad and ugly! Kids are going to still suffer, kids are not ALL going to be healed, families will survive the pressure and some will not! Life will not EVER be perfect down here and if "LOVE" is Luke's answer, then why isnt he thriving, getting better? Shecki's other kids thrive, why doesn't he? Seriously people!!! LOL
ReplyDeleteUnfortunately, I think it's a common viewpoint for PAPs. You hear, "All you need is love," or "Love conquers all," or other platitudes. Well, love doesn't make seizures go away.
DeleteYes you are SO right! I love my child and its so frustrating to wonder if/ when she will talk and make any typical progress. I see other kids her age and ache for her, seeing what she is missing out on in life. Heck with me, if she stays in our family or not, ALL I want is for her Is to be the best her she can be. I am standing in faith that someday she will be healed, in this lifetime or the next!!! IF we never see the her come out of whatever issues shes in, I at this point don't care, I will praise God to see whatever progress she makes even if its somewhere else. I cry daily and appeal to God every moment to help her, and woukd give her up, and it would be hard, BUT if it meant a cure of any kind for my little girl it would be worth all the pain My family has gone through!!!
DeleteIt's so hard not to compare kids. Even taking Hannah to school, I see kids in her class that are SO much taller than her. Or when my son's girlfriend brings over her 2 year old, and he's running and playing with my kids, while Luke sits and rocks and screams. I see families say that they're so thankful for Down Syndrome or Autism and I think, "Will I ever get to that point?" Because I'm just not feeling it right now.
DeleteI'm not feeling it either! I sat today and played with my active, social, "maybe" autistic child. She interacted with me, held onto my neck, let me rock and hold her, brought her toys to me for two Hours! No tantrums or anger, but as in the past these moments come for days and then go! She even tried to kiss me! I am always emotionally guarded because then she goes from that to not normal again. In my situation I can see normality, almost and then it can go easily, why its even harder to accept what she has and then doesn't have from day to day. If she either 1) sat on the floor like Luke and did nothing or 2) Acted like she can it would be easier, then seeing normal, then not seeing it. It leaves our family scared and exhausted not sure WHO we are going to have THAT day. I hope its trauma based, but fear it could be mental related as it just is so variable. I think all the time, maybe shes just a terrified child, has anxiety, but really we are at a crossroads of do we continue or not. Hubby wants to move first, see if the downsize and more attention and focus on her helps, afterall she is VERY social. He also wants MORE kids, bio or adopted, and I was open to it before we adopted her, not convinced mind you, but open. We have just our older two and they are and always have been really easy kids and super accomodating and are awesome with little sis, but its hard for them too because they care so much and it hurts them to not be able to help her! But I am holding onto something I read recently, that " don't move on any decision in your life till you have peace about it" Our adoption story was what people describe, that God flung open the doors and gave us provision, YET DH says, this whole situation smells funny! Him and I talk about how the devil hates adoption and doesn't want this to work, and we do feel we are being "sabatoged" and why we have chosen to move and downsize! Our new area has access to our absolute favorite rec activity, and like us, our daughter LOVES it too, so we hope to be outside daily instead if here, being stuck more indoors. Sunlight, fresh air, exercise does everyone good, so our hope is this will clear our minds, and help us to hear God and have the peace to make the right decisions regarding everything! That's our hope anyways!
DeleteYou know your child best. Do what you feel is the right thing. Don't be pushed by people you don't even know. (including me)
ReplyDeleteThanks, Kristine. This boy didn't come with an instruction book, and I'm in way over my head here, but I'm trying.
DeleteI hope you get some answers. Prayers for you and your sweet family.
ReplyDeleteThank you, Robin! :)
DeleteYou're a very good mama and don't you ever forget that. I can relate to your pain and frustration. It's so very hard not knowing what the problem is and wanting to do your very best for you child and not having the tools to do it.
ReplyDeleteIt is. Now we have to make decisions about what the district is offering in terms of his IEP, and I just want to place him where he'll learn the most.
DeleteRead this and thought of you:
ReplyDeletehttp://www.newyorker.com/reporting/2014/07/21/140721fa_fact_mnookin?currentPage=all
It's all a lot easier to solve if you have a lot of family money :-(
Wow, thanks for sharing that. I read it, and I will share it with my husband, too.
DeleteHi, I just wanted to comment on the discolour in the eyes. Out daughter was to have her yearly eye examination and she has "black spots" on her eyes, so I questioned him. He said it's very common in Asian and the older they gets, they could get more and not to worry because her eyes were perfect. Emily
ReplyDeleteInteresting! Still waiting on the referral paperwork for ophthalmology, but that is somewhat reassuring. Thanks.
DeleteFollow your heart and the Lord's guidance. No one else can judge what you need to do, they are not walking on your path. I am praying for your family and appreciate your willingness to share not just the great but the really hard too! You are an encouragement to me as a future adoptive parent. Shriene
ReplyDeleteI appreciate your prayers, Shriene. Best wishes on your adoption journey!
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