Bella

It's late (or early depending on your perspective) and I can't sleep...so might as well blog, right?!

So much to blog about...I really do need to work on being a more consistent blogger. Sigh.

Several of you have asked how Bella is doing. I'll try to answer without putting everyone to sleep.

Where to start? Oh Bella, we had no idea the journey you would take us on when you were born. That's probably a good thing...

It seems as something new happens every week. Apparently, Bella is afraid that her mommy is getting bored. I wish-boring sounds mighty good.

We still don't have a diagnosis as to why Bella is delayed. We know she has low muscle tone, we don't know why. We know she has vision issues, we don't know why (her eye exam is normal). We do know that she is completely adorable and has captured every inch of our hearts. (I'm her mommy, I'm allowed to say that. Right?!)

We hear the docs say lots of words like "interesting" and "challenging" and my personal favorite "a mystery" when describing Bella. Not really words you want used to describe your child.

The low muscle tone (and Bella has really LOW trunk control), has impacted every aspect of Bella's life (and ours). She still is not sitting independently at 16mo. We have 4 therapy sessions/week, and while the progress is sooo slow, we are making some progress!

The latest issue for Bella has been eating. Bella is not gaining wt, so our biggest challenge has been to increase calories in hopes of avoiding a feeding tube. Our days are filled with therapy appointments, doctors visits, and trying to get as many calories in as we can. All the while, trying to maintain a routine and a sense of normalcy for the poor boys.

There are many days when I want to have a little pity party for myself!! I've always wanted to be SAHM, and I feel like that's been taken away from me! It's not fair!! I'm sure we all have things in life we want to say that about though. I keep thinking that surely one day this will be all worth it (at least I hope so). I worry so much what this whole situation is doing to the boys, and how it will impact them in the future. Bella is the last thing I think about before I go to sleep, and the first thing I think about when I wake up.

Ok....it's late and I'm probably not making to much sense right now, since I'm falling asleep while I'm typing. Here are some specific prayer requests for our family (in case you are wondering):

-Bella will be admitted to the hospital again next week for 24 hours for a 24 hr. EEG in hopes of determining whether Bella is having seizures. I could cry just thinking about being in the hospital again-blech. Pray that this admission would be fast, and go smoothly and we would not have any visits from jerk neurologists (yes, that's another story...)

-Pray for our boys that they will not feel abandoned in this whole process. Pray for Craig and I, that we would make wise decisions regarding Bella.

-Pray that we will get all Bella's feeding issues resolved. Right now we are thickening liquids and forcing calories. Did you know 1tsp of butter has 41 calories and a tbsp of heavy cream has 57? In case you were wondering.

-Pray that Bella would not get sick!! Bella is just now starting to do things that she was doing before her illness in July. Because of the low muscle tone (and whatever is going on neurologically), illnesses affect her so much more than other kids. I hate that we had to spend 2 months of therapy time getting back to where we were pre-illness.

I love that little girl with all my heart, and my heart breaks at everything she's had to endure. It could be so much worse, though! So...we keep getting up every day, hoping that Bella will decide not throw any excitement our way! Her smile melts my heart. Bella loves her momma, and her momma's pretty crazy about her too.

Thank you to everyone for reading, praying, and asking about Bella. I feel like all I do is talk about her-know that we appreciate all of you so much.