I was just so down and frustrated. So I just started to pray that someway somehow God would make it work. Someway we would be able to afford it and we would survive and make it. I asked a few close friends to pray as well. Some of the most trusting devout women I know. One of my friends said it best. "While hundreds of dollars seems enormous to you, it is not enormous to God. His resources are limitless." After she said that, I just felt peace. That I knew someway it would work. Even if we lost what we felt was important, we would survive and be stronger for it.
So I put my mopeyness behind me and started researching and calling. Turns out we can get it online for a lot cheaper than where we were getting it. If I shopped right I could get it down to $250 per month. Almost half! It seemed more doable. We cut down our cable/internet and phone bill that saved us almost $50 a month. Then we cancelled our Y membership which is another $65 a month. All of a sudden it seemed doable. I called Children's to ask how much longer they thought she would be on the tube and formula. She said she couldn't say for sure but if she had to guess atleast a year or two. So we have to make this work for atleast that long. Our family qualifies for nothing. No WIC, no foodstamps, no Medicaid, no nothing. Because we married and both work hard, we get no help with our disabled child. Doesn't matter if we can't afford to take care of her. Because we did things "right", we don't get help. Had I just upped and had a baby with whoever I wanted and didn't work, we could get all the help we needed. Sometimes this system is so messed up. I know if worse comes to worse, I'd have to quit my job so the kids would qualify for WIC or E would qualify for Title 19 insurance. I don't WANT to use the system. But at the same time, I've been paying into it for years. And now I am the one who needs it. And I can't get help. So frustrating!
Anyways, I also talked to Children's about cheaper options. Turns out Carnation makes a supplement sold in cans for tube feeding. Her current formula is about $50-60 a case. She needs 4 cases a month. I looked up the Carnation stuff and it's $25-30 a case!!!! Much much cheaper. And they have the high calorie version she'd need plus they have an even higher calorie version. I'm not sure if she can use that at her age, but if she can we'd need even less formula because she'd get more calories while using less formula! It's definately not the highest quality. I mean it's a glorified chocolate milk but it's calories. And right now that's what she needs. So on her next appointment on June 17th we will talk about switching her to the Carnation stuff.
Then a friend from Facebook wrote to me. She has a 4 year old daughter who is tube fed as well. Turns out she has one extra case of formula per month they don't use. This was the really expensive stuff that Evelyn was supposed to be on originally but we couldn't afford. So she is going to send us one case a month and we only have to pay shipping (about $25).
Everything just seems to be falling into place. If we can switch to Carnation, and get one case a month from my friend, that's only about $125 a month! Much more doable than $500. I know we'll be okay now and we'll make it through this hurdle. My fear is that Evelyn takes a turn for the worse or suddenly needs more formula or can't tolerate the Carnation. But we'll face that when it happens, if it happens. For now, I know that God answered our prayers and using a few people in our lives, made us be able to get through this. And I am very thankful. And once we wean Joey, things will get even a little more easier since we won't need to buy him formula anymore. Thank goodness we cloth diaper and don't have that expense as well!
As for us, Evelyn has two weeks of school left. I can't believe she is done with preschool! She took a field trip to the Art Museum which she loved last week. However the only thing she could tell me was she didn't have a carseat on the bus and the glass was beautiful :) I know she'll miss her school. She's made wonderful friends. Her first friends. She's gone from an almost non verbal severely delayed little girl who rocked in the corner, to a wonderful beautiful outgoing little girl with tons of friends and who most people can't even tell has anything wrong with her. She is still behind developmentally but I know with time and patience and love she will catch up.
Because of her delays, we will be holding her back a year. She will start "regular" school at our Church next year but will be in 4K. We met with the teacher and thankfully there are quite a few 5 year olds in 4K so she won't be the only one :) She is super excited to ride the bus each day. I just can't believe she's so old already. Seems likes yesterday we had our crazy sqwaking baby :)
It makes me sad to think of them getting older, but I know that's the next stage in our life. Next year will be my first time not having three little ones running around. I'm so used to them being here, I can't imagine when the day comes when they are all off at school all day and the house is quiet. I know I enjoy quiet every once in a while, but knowing it's gone for good will be sad. Patrick and I are always open to having more children, but I know the day will come when one of these babies will be our last. So I'm trying to savor every moment with Joey. I can't predict the future, and he may be our last. But I pray we will be blessed again in the future. However I know with our current circumstances, and Patrick having to go to paramedic school this year or next year, it will be several years before I have a newborn in my arms again. So I'm really enjoying every moment with Joseph.
Joseph is getting to be so big! He turned 3 months a few weeks ago. He has started laughing and batting at toys with his hands. He's SO alert and so calm and takes everything in. He loves being talked to and just smiles and smiles when you talk to him. He has a big cute bald head with the biggest cheeks. I love him to death! I'm so thankful to have him. He's big too. He is about 16-17 lbs and 26" or so. Today he started wearing size 12 month clothes :) Last night was a big night too. He slept from 6:30pm and I had to wake him up at 7:30 am. 13 hours!
Sophia is getting bigger everyday too. She's very excited to play T ball and soccer this summer. I have a feeling she'll be our sports girl. She already is amazing at soccer for being *just* 3 years old. She also is excited to start preschool next year. She'll go two mornings a week and will have the same teacher Evelyn had when she was 3.
As for us, life is life. We are both working two jobs and as busy as ever but try to find time to spend together. This weekend my parents took the girls and we got a sitter for Joey and were able to go out for Patrick's Birthday. I honestly don't remember the last time we went out alone. It has to be 6 months to a year since that happened. It was a lot of fun and hopefully we can do it again. Today I just got to spend some one on one time with Joey which is the first time since he's been born. I loved just laying down and playing with him. I don't get that time alone with him since being #3, he has two others to contend with.
We are looking forward to summer. The girls have been outside constantly and it has been nice to not have them cooped up anymore. Evelyn will take T ball and swimming and vacation Bible school which she is really looking forward to. Sophia has T ball and soccer and she will go to the daycare at Vacation Bible School which for her is exciting :)
So that's us in a nutshell. We just ask for your continued prayers for our family that we can make it through this trial somehow. We look forward to seeing everyone a lot this summer!
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