It wasn't suppose to be this way....

...but it is what it is. As a parent of a micro preemie I am learning that you can only take so much when it comes to doctors and therapists telling you that your kid is behind, has delays, this and that...before it starts getting to you. I know that they all mean well, and they do intend to help her, but it is quite overwhelming.

Here's the rundown: We went to go be evaluated on her development today. We see AJ Pratt who is with Phoenix Children's. Now this lady knows her stuff! She is very educated and has great connections at PCH so she is going to get Bree the help that she needs.

The help that Bree needs has greatly expanded. Within the hour of our evaluation we rounded ourselves up four referrals for other specialists. First the referrals:

1. Intensive Feeding Therapy - That was not a big surprise to us. She refuses bottles no matter what we do. Every so often she'll comply and do great, but usually it's refusal.

2.Neurologist - We get to go back and see Dr. Teodori for some concerns with her muscle movement. She is very 'jittery' with her movements and while that was okay at 3 months adjusted age, she should have well outgrown it by now. I am sure we will be referred to have an MRI done.

3. Nuerosurgery - Yup, nuerosurgery...Bree's skull plates are not growing together correctly and she has problems with the 'sutures' (where two skull plates meet) that are in her forehead area. She has a ridge that runs down the front of her forehead. This could potentially limit her brain growth so we need to have it looked at and followed. I am sure we'll need an MRI for this as well. (maybe they could just do one and use it for both purposes?)

4. Physical Therapy - I will elaborate more in the next portion of the blog, but again, not a surprise...just another thing to try and squeeze into our schedule.

Now onto the evaluation portion. I showed AJ some pictures on my phone of Bree doing tummy time, and explained how she will not push up on her arms. After some evaluation and play, she explained that Bree has very loose shoulders. She does not have good muscle strength in that area and that is holding her back from doing many things she should be. Because of her poor shoulder muscle strength, she is unable to push herself up when on her tummy, she is unable to play with toys in a certain way when sitting up (it's hard to explain but makes sense), and so on and so on.

In order to understand her 'placement' on the developmental chart one must know her adjusted age. This is counted from her due date (December 19) to today's date. So, as of today, Bree is 28 weeks and 3 days old. Here's how she rates in the following categories:

1. Language: 32 WEEKS!!!! (that's my girl!)
2. Social: 22 weeks
3. Fine Motor: 16 weeks
4. Gross Motor: 14 weeks, 6 days
5. Play: 18 weeks

As you can see she is far behind in many things..which can be worked on but it is disheartening at the same time. What is most disheartening to me is that I feel as though Riley is falling to the side during all of this. There are many appts that aren't okay for her to go to (waiting rooms aren't fun for toddlers) so I leave her with friends who have kids similar in age. When therapists come to the house for Bree, Riley gets to watch cartoons so that she is quiet and out of the way. I feel as though I am not being a good enough Mom to Riley.

Bree requires so much attention and help with everything that I don't know how to get back to playing with Riley before Bree needs something else. I feel that this new schedule we will start when we back from vacation is going to occupy so much time I am not going to have time left for Riley. Adam and I have even thought about putting Riley into day care two days a week just to have time to do all of Bree's appts (and to relieve our friends) but we cannot even do that because RSV season is coming up and we can't risk bringing it into the house and getting Bree sick. So, I don't know where that leaves me...but I will figure it out. I'm going to have to because I have no other choice. It's amazing what you can do when you have no other options.

Sorry to make this post about my frustrations at the moment...but that is what is going on in our lives today...and tomorrow...and the day after. All we can do is take it one day at a time. And to love each other.