Monday, August 8, 2011

Life goes on...

Hey Everyone,
It's been a while since I posted anything, I thought it would be good to give an update on how Leah is doing. We've been home for about a little over a week now, and it has been really great. The incident last weekend at the ER for the G-tube, was a rocky start, but she's been doing great since then. I've started going back to work full-time, a bittersweet experience. I didn't realize how much I missed working (if you can believe that). I guess it shows how much I love my job, and the company I work for. The environment and people are great, so it's nice to be back in the swing of things, even though things seem to be more hectic than when I left. On the other hand, I miss Leah so much, it's almost painful to leave her everyday. I cherish the few hours I get to spend with her when I get home, and feel guilty sometimes when I take a while to decompress and have a moment to myself. Luckily, the workday goes by very fast for me, so it's not too too bad. I feel bad for poor Zev since he stays at home with Leah all day and has spent the past week unpacking mostly on his own. I helped him over the weekend, but it doesn't compare with the work that he's put into the apartment while I'm away. I'm sort of glad it's him and not me, just because he's so much better at decorating than I am, but I try my best to help in what I can.
We had a pretty good weekend, although the nurse that we got to cover the days off of our usual nurses was not the best. I don't know if he was new or just in it for the money, but he was making all sorts of mistakes, messing up the g-tube, mixing up med schedules, and leaving a mess everywhere. I had to ask the guy 3 times (3!!) to leave the toilet seat down when he went to the bathroom. I mean, come on, that's just common sense, right?Anyway, luckily, my mom came over on Saturday and watched Leah with Mr. Incompetent Nurse and Zev and I headed to the store to get stuff we were missing for the new apartment.
We went over to the mall we would frequent before Leah was born, and when she was a few weeks old. It has a Best Buy, Target, and lots of other shops. Going without her was really hard. Of course on the weekend is when most families go out to the mall, so I shouldn't have been so surprised to see so many kids. It was torture to go and see all these families with their kids, running around, carefree and healthy. And the babies! There were babies everywhere you looked. I know I shouldn't feel this way, but every time I see someone with their baby in a stroller, I feel angry and sad. Why is it that these kids are perfectly fine? I know I shouldn't be bitter, but I still get depressed seeing other people's babies, even our friend's kids, growing and developing at what seems like light speed. It's normal for them to do so, and I don't resent them for it, it was normal for us too, a few months ago. But now, everything is uncertain; a question mark, a fog.

Even so, Leah is doing remarkably well. She's been doing her tummy time and trying really hard to hold her head up. She still has a ways to go, but today she was doing really great, she held her head up on her own for a few seconds. She has also been tolerating her glasses a little more. She had them on most of the day, and was smiling and laughing at Zev when he'd play with her. She was paying attention to the book Zev and Betty (her nurse) were reading to her, and it seems like she was really liking them. She also has been steadily gaining weight. I have seen a huge improvement, just in the past few days. Her little arms and legs are getting chubbier by the day! It's great to finally see some rolls on those little spaghetti arms of hers. I can also tell that her muscle tone is improving. You can actually feel her little muscles in her arms, where as before it felt a bit doughy. I think it may be attributed to the new formula she's been getting. I am still pumping breast milk for her, but I'm not getting as much as before. So, we have to supplement it with formula. She's getting Enfacare, which has an extra 2 calories per serving, and I think it's been helping her gain more weight too.

She is going to see her ophthalmologist next week, and they are trying to get her a pair of baby goggles instead of the glasses, so that they don't move out of place on her face. Her head movements are so extreme sometimes that her glasses end up poking her eyes and she gets even more upset. Hopefully the googles will work better. I also contacted this great doctor called Dr. Bill Takeshita at the Center for the Partially Sighted. I was just reading this great book by Rabbi Naomi Levy where she talks about how her daughter needed to see Dr. Bill and how he just disappeared one day and retired. It turns out that he had one blind himself, and he took a leave of absence for a couple years because it was such a blow. But he's back at his center working and continuing to help kids with poor eyesight. He's only in the Culver City office once a month, so she won't have her appointment with him until Sept. 28th, but at least she's been scheduled for it.

She also had her occupational therapy assessment last week, from one of the therapists who works with Regional center. They are meeting tomorrow to determine is she is elegible to receive benefits from Regional Center or not. I am pretty confident that she will, I mean it's pretty obvious that she is lacking a lot of development just from being in the hospital. I can't wait for her weekly sessions of occupational and physical therapy to begin. I am confident that she is going to develop so much with them.

Well, it's getting pretty late, so I'll sign off, but I will be posting again this week. We have lots of photos to share that I don't have on this computer so I can't now, but I will soon!

Good night and thanks for keeping Leah and our family in your thoughts

Peace
Frani


3 comments:

  1. It is great to hear that Leah is doing so wonderfully. You have a beautiful baby. You are truly blessed no matter how hard things may seem. Your family was chosen for a reason. Leah is an inspiration. Can't wait to see new photos of her. My 14 year old daughter and I wear our MTFBW Leah wristbands everyday and tell everyone we can about your story. God Bless!!

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  2. Dear Frani and Zev - your Leah is so lucky to have you two! God lets things happen for a reason. I like to think that when we finally find out that reason, we will no longer care why. I had a baby who died from a birth defect, then my son was born 3 months premature and had a massive brain hemorrhage. we were told to allow him to die. Something inside me wanted to scream "NO" but I nicely and firmly said "NO" instead. We had a very rocky first 3 years, he had hydrocephalus, his eye was affected by the brain hemorrhage, he couldn't suck and swallow. couldn't keep his body temperature steady, among a bunch of other things.He wound up having about 25 surgeries up until his late teens. The future is scary, the not knowing part is scarier, because if you knew exactly what you were up against, you would know where to worry and where not to. I have been drawn to your blog and FB page because it brings back a lot of memories of what I went through except my son had a few diagnoses, the worst of which seemed to be cerebral palsy. You are still searching for your diagnoses. I looked at it as a life adventure, no one gets up in the morning and says "wow I think I'll watch by child struggle today". And there are some who couldn't do it. but you two are the kind of loving, smart parents who will do whatever it takes to get through this for your daughter and for yourselves. People are out there who care, and who worry for you, and are amazed at how great you are doing with what you are dealing with. I know the second worst part for us was the cost of everything (first was all the medical things my son went through and his discomfort, pain and struggling to do everyday things that people take for granted). Even now when people talk about their children "My son was walking at 9 months" I still have to answer "wow my son was walking at 5 years!". But I laugh at it now. Life with a child who has a problem is an adventure. and every day it is 2 steps forward, 1 step back. Some days its 2 steps forward, 3 steps back, but you keep moving forward. You seem like you are doing everything possible to help your daughter, and you don't know me, but you put a smile on my face often with your blog. Your daughter is a fighter because her parents are fighters, and if you are like me, you didn't even know you had that fight in you until now. I also had an issue seeing other children running and playing and doing all the things my son wasn't going to be doing. It wasn't jealousy about their skills, it was sadness at the loss of the skills of my son. But he never had those skills to begin with, so I tried not to look at it like a loss. every day was a gain of some kind. When kids his age were in nursery school, my son was trying to learn to swallow. and of course he always wanted to be an actor because then he could be anything he wanted to be and not be disabled. He's 27 now, has graduated from college (my district didn't even want him in their school at the beginning) and has done rather well overall. but it was a long hard struggle. I wouldn't want to be where you are now ever again, those days were such a scary time. But its the not knowing that is so hard. and I still always think, maybe around the corner there is a cure..and I still hold onto that. Your daughter is adorable and is very lucky to have you two for her parents. You amaze me. Good luck and God bless you. and a big kiss to Leah from a strange woman from New Jersey :)

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  3. I know what it feels like to see those families at the mall. I had twins in January, but one of them, my son, had died a couple of weeks earlier. We'd lived with the question mark you describe (indeed, I know it too well...) for most of the pregnancy, as we learned very early on that he was probably...and then definitely...very sick. His little one-chambered heart fought for much longer than anyone expected, and we were so proud of him even though he didn't make it to birth. We called him our little Warrior.

    Anyway, you don't need my sad story, my point is that now there are times when I feel like the world is just OVERFLOWING with twins all of a sudden. They're everywhere--on TV, at the park across the street, at the mall, on Facebook, at work...where did they all come from?! Healthy twins, alive, growing. Twins, triplets, more...all fine and beautiful and whole. I feel like I can't stand it sometimes.

    Everything gets magnified when you're in the kind of situation you're in. Don't feel bad about acknowledging the sting. You're not wishing anyone ill, you're just longing for what they have--"normal." And it's totally fair for you to feel jealous of that. Or hurt, or angry, or whatever you want to call it. I am.

    No baby deserves to struggle. Not my son, certainly not little Leah. I'd say it's not fair, but the word "fair" just seems kinda stupid after a while, doesn't it?

    But you're strong. I'm strong. Leah is so, so strong. The ability to watch her get better gets me through the day sometimes. I'm so glad she's putting on weight and that her muscles are developing. And that smile and laugh...*squish*...they're worth a million tears.

    I know.

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