I finally took Joey to his well child appt. and we got some concerns addressed. He is now on Prevacid, although it was pretty difficult to get the right variety prescribed and covered. The pedi had to change the prescription twice. At least now I know about the list of meds Medicaid covers and the steps to preauthorization. I even have the site bookmarked. :( We are going to be taking him to a GI for the reflux and also to an orthopedist to chat about the leg and back pain he's been having. It is not normal for a six year old to want to sit down because his legs hurt.
I finally saw a dr. for Chris that took his cough seriously. I was so tired of being told, "It's a virus; wait for it to go away." This wonderful dr said, "no, while it might have been caused by a virus, it isn't a virus now.... it's probably walking pneumonia." She said whatever cough he gets every winter might be a result of asthma and that we might need to put him on a control medicine during the cold months. I had just read the other day he was diagnosed with asthma as a baby, and wow, what do you know. We will see how he does after his breathing treatments are done. It was a major difficulty to find his nebulizer, actually. That was the night I went to three pharmacies and was so unbelievably tired and stressed out. I felt so weighed down. I found one the next day, though. It looks like a train and Chris loves using it. When we had a follow up with this same dr to check Chris' lungs again, and she found he had an ear infection. No fever, no pain. :( But that made a second antibiotic for little Chris.
We had a fight with Cooks Childrens Home Health about Ilse's insurance. They would not believe that a non medicaid provider can sign orders for supplies that Medicaid will then cover. Finally we got them to agree to call Medicaid about it. It is wrong to make me sign a waiver and refuse to do the research on it. Apparently they have been doing this to people for years. They bill medicaid and then charge the person in addition. That is illegal, but they didn't believe me. I hope they get it straightened out. I got pretty testy with one lady and called today to apologize to her about it. It isn't her fault she doesn't know. Well, it is, but that's what I'm telling myself to make myself feel better about it.
We've had to put our adoption pursuit on hold a bit due to needing to switch to another agency. When we heard that news (our agency is no longer licensing people in our particular situation due to some issues with a certain regulatory agency) I reminded Tim that we wouldn't have been pursuing adoption right now had we not gotten that 'open your home or close it' letter. We think we will recover from the holidays/sickness and then assess our options. We have a whole year before our new homestudy expires, so we might switch to a new agency that is still licensing people in our particular situation, or we might pursue adopting a baby, who knows. We have lots of options, but at the same time we feel like we have none.
Ilse is progressing well with her growth and development, aside from being so sick she can't keep much food down. She is eating so little right now I am sad about it. But whatever I feed her she just gags and gags until she barfs. Yesterday she barfed up everything I had fed her more than two hours after she was done eating it, and it wasn't digested much at all. That is not normal at all for her and I know it has to do with the fact that she is just sick. She hasn't lost too much weight, and she apparently still weighs enough for the GI to warn me sternly, "We don't need to make her any fatter." :) I'm going to do what I'm going to do, and momma knows best. She is doing so well with being fatter this winter. We have already passed the time of year that she was so horribly sick last winter that I know this is the right course-- not to mention that Ilse's pedi told me she would fire us if I made Ilse lose weight intentionally. :) I love it when we have a dr who we see eye to eye with. Her dr. is the absolute best.
The boys are still continuing to learn and grow. They have made a lot of headway through the list of goals I made at the beginning of the school year. I am so proud of them. We still allot most of their time for play and things around the house though, and even though I know they are behind their peers, none of their peers went through what our boys did their first three and four years of life. It is wrong and unfair to expect them to be on the same level as kids who haven't had to struggle a day in their life with having enough food, or hugs, or warm covers, or even being talked to and learning how to talk. I am just so proud that my boys know how to wipe their own butts (well, any mother would be!) and so thankful that they are growing up happy and healthy and loving toward the Lord, their parents, and sister. I am not saying I am proud of myself, but I am proud of them, for their hard work and loving hearts. They are continuing to feel more and more secure in their home, and that is worth more than being able to read at five and six. Do I sound defensive? I guess we are a bit. We've heard some negative things about our process with the boys. I just have to remind myself that no one else but us lives with them and sees where they really are.... just us. And we know this decision is the right one for their security and development.
Tim is back at work. :( That's really all I have to say about that, other than, I miss him and can't wait for summer.
I have news of my own to share. I have taken on a deeper role in the special needs community. I am an admin on two facebook groups, one is a medical supplies co-op group and the other is a medical supplies co-op buy/sell/trade group. I am currently a co host in a syringe co-op, and it is kind of fulfilling to do this administration, in a strange way. Also I have been getting to know a lot of other moms here in Texas with the Texas Mommies of Miracles group. I am meeting people who know what day to day life is like, and I must say, I am really enjoying being truly understood.
It occurred to me today that I finally feel free to be the kind of good mother I want to be, instead of being like whatever others think I should be. I don't know exactly what that means yet, but it occurred to me today, and I know it's true. Since having Ilse I have become a very confident person, and not in a know-it-all way, although I've been accused of that, but in a, I know what I need to do to take care of my special needs/MIN (many intricate needs) child, and I am fully confident in my ability to do it. (At least, I am outwardly fully confident. We moms all have our moments of terror when we know we might fail and we know there is no one else to step in when we do, but that is just part of being a mom to a special needs child.) I know how to find her drs, and we've made a network of excellent drs who always get us what we need in a very timely manner, I know the tests she needs on whichever schedule and I know how to research, and boy, do I do a lot of research. I am thankful the Lord has given me the ability to handle our litle baby and her needs.
One other thing. I just want to say, whoever made the rule that adopted kids or older kids (you take your pick) have to be jealous of the bio baby or youngest baby was dead wrong. No one could take better care of his little sister than Joey does. He could entertain her for hours with a happy, joyous attitude. He bounces around, makes her laugh, makes faces, says goofy things, and she just laughs and laughs. He loves her so. much.
We are such a happy family and we couldn't be more thankful for our three blessings.
God has truly blessed us.