So many Ups and a few downs...

Finally, a moment to write...it feels good. Makes me realize how much writing these words helps me. As much as I want it to be a source for friends and family to follow Bella's journey it is serving a dual purpose...it helps this Mom out..a lot. It amazes me how much has happened in the days following Bella's diagnosis. It has not even been a month and trust me when I tell you, it feels like it has been 10 years. I actually thought about that the other day and really could not comprehend the fact that its only been 3 1/2 weeks.

Well let's get to the UPs... Bella had a wonderful PT appointment in the pool early in the week. Now as you know from reading, Bella has been less than happy during her sessions. But this past week in the pool she was OUR Bella..smiling, happy and doing really well. I laughed and said to her therapist.. "Bill, meet Bella". He jokingly responded "Hi Bella, I'm Bill". Now it may be a fluke, who knows..but it sure was enjoyable.

Bella has consistently been up extended on her knees, pulling up on the couch and coffee table and window sills. She reaches for things out of her reach and makes a real effort at it. I am starting to feel like she has the "desire" now. Something she seemed not to have before.

Now here is the big ONE, so get ready... we had bought Zackary a mini ball pit (inflatable) like the ones at arcades, for his birthday. So Bella was sitting in it and started to try to get out.. she wanted a book that was on the floor outside of the ball pit. She got up on her knees and started stretching for the book, which was quickly pushed a bit further out of her reach by a very smart Miss Jen..so Bella kept trying and trying. First getting one leg up on the rim and wiggling. The poor Angel tried for about 10 minutes but DID NOT GIVE UP until she got both legs up on the rim and shimmied out!!!! Now the physical aspect of that is huge no doubt, but for me, what really got me was that she didn't give up. She was not content to stay in a place she did not want to be. In the past she would have given up and just sat there until someone got her out. This was a very MOMENTOUS occasion and something HUGE to celebrate! Another big leap for our girl.

Now as if that was not enough for one day.. she also accomplished another big feat.. she drank from a tiny straw in a juice box. Bella, like many Retts girls, has had a very difficult time with chewing, swallowing, and sucking. She was so proud and happy when she got the juice out. That sure was a lot for one day!!

Its these successes that keep us going. Because to be honest, its not always all "good stuff". There are so many worries, on a daily basis. Very shortly after she started her medicine she had stopped grinding her teeth but over this week it has started up again. In addition she has started to hit herself by very quickly hitting her hand to her forehead. When I see her do it, my heart breaks... is she doing it out of frustration? Is it an uncontrollable reflex? Does she do it because she has a pain in her head? It is scaring me and I am anxious to talk to her doctor about it.

We are still at a standstill with her speech. Not much change. She will make sounds every now and then but no solid words. I am desperate to hear her say something, anything. Its probably selfish but I long to hear her say "I love you Mommy". For now however, her laugh is is the BEST medicine.

She had a tough week with her stomach..she had a few days where I could tell that she was very uncomfortable and had a belly ache. She gets very frustrated when she does not feel well because she is smart enough to know whats wrong but cannot tell me. See, that is the difference between an infant not talking and Bella not talking.. she knows. She will often throw her head down in her lap or against me in exhaustion from what I think is trying to communicate what is bothering her. It kills me. I keep trying to reassure her that we will find a way to communicate but I don't know if she believes me.. LOL!!

Bedtime is still a bit of a struggle with Bella fighting sleep for at least a few hours, but she seems to be getting to sleep a bit quicker than in the past.

We received a telephone call today from Children's Hospital in Boston, their Retts Department and Bella has an appointment in three weeks! She will be seen by the doctor doing the research that is on the edge of a breakthrough to having the cure! We are so anxious to have her seen there and to see what else we can be doing for her. This center is cutting edge and one of the best in the nation and we are so blessed to have it in our backyard. So I am logging all my questions and hopefully will have some guidance soon. The center has doctors that specialize in all of the issues above, gastro for her belly, sleep, speech, etc etc.. I wish the appointment was tomorrow.

But for now, its Friday night, my babies are quiet and I am going to spend time with the most wonderful husband a woman could ever have. Thanks for reading and please, if I may ask, keep the prayers coming.

I would love to find ways to help her sleep