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Wednesday, May 26, 2010

When life throws you lemons make lemonade :)

As Bailey gets older I've been beginning to think every little bit of good news comes some bad news right behind it. It's all so bitter sweet.

Bailey had a speech/feeding evaluation on May 14th where they confirmed the fact that she has low muscle tone in her lips, cheeks, tongue, and possibly her throat. She needs to be taught how to chew properly, move her food side to side, control her tongue, and swallow ect. Basically she needs speech therapy on a moderate to severe level. She didn't do that bad on the speech portion, I was really happy with that. She scored just at a concern level with an 83. I knew all her talking this past month or so has paid off. :) We're on a waiting list for speech therapy at the hospital since she needs someone who is really proficient in feeding issues because that's the main issue but if infants and toddlers can come in in the mean time that would be helpful also.

We headed back to Shriners Monday for Bailey's brace check. Dr. vB adjusted her braces and we are having NO more horrible red areas or sores with the straps but he again didn't like how her foot looked. So we go back in a month and may start casting then depending on the looks of things instead of waiting til August. I really hate to see her be in a hot cast in the middle of summer but it is what it is.

Bailey has been recommended to start school in August! Did you hear me!? SCHOOL! 2 day's a week for 2 hours a day to help her transition into a school-like environment and be around other kids her age. We are SOOO excited for this and are awaiting more information! Probably the MOST awesome news we've gotten in awhile!

Saved the worst news of the month for last but most importantly not least. We followed up with Bailey's Neuro-muscular unexpectedly yesterday to address some major concerns in her change in behavior over the last 2 to 4 weeks. I don't want to go into detail all that goes on when Bailey throws these "fits" of anger but it is a child I do not know and very much so more severe then a simple terrible 2 tantrum. Her doctor referred us to a neuro-developmental doctor to address these issues as it may be something serious like autism, bi-polar, OCD, ADHD, ect. and that she may need help or medicine to control these fits so as she doesn't hurt herself. I was pretty devastated hearing that as if she doesn't have enough going on but just like everything else we will figure it out and deal accordingly. Unfortunately we will no longer be seeing her neuro-muscular doc anymore after August because he can no longer be of help to Bailey. I will really miss him, he is my favorite doctor of her's and I'm really sad he will no longer be apart of her team.

We are scheduled to have the G-tube put in next Wednesday but as of right now that date is on hold because of insurance issues. They always give us a really hard time with overnight stays. So hopefully we'll be able to get in and get it over with if not it will be happening soon regardless.

Other than that Bailey is goofy as can be, talking up a storm, and mocking everything in sight. She's getting really good at walking with her new AFO's and new shoes. I'm amazed as is everyone else as to how far she has come. She may have set backs here and there but her over-all progress is outstanding! She is the strongest person I have ever known and I am SO blessed to be her Mother!

Wednesday, May 12, 2010

Does it ever end?

Tuesday Bailey had a GI follow up appointment, she gained a little over a pound in a month which is good but unfortunately not good enough. Bailey's eating hasn't picked up enough for them to consider taking the tube out completely. Dr. Sehgal is afraid if they take the tube out or lower her feeds we will be in the same boat we were in again with weight gain and lack of calories. So they would like to place a G Tube for a more long term type of help. We have to get an x-ray of her stomach before we can get a date but it will within the next 2 to 4 weeks and she will be admitted to Children's for 2 days.

Her choking has continued and she has had more blue episodes, we've seen every team to address the issues except pulmonolgy. We have an appointment for May 24th to see the Pulmonologist that she saw after she was released from the NICU. I hope to god he can find us some answers because it is the scariest experience we've ever gone through and we are so afraid of a bad outcome. There has to be something SOMEONE can do.

We will be heading back to Shriners in 2 weeks instead of 3 months to check out her braces, they've been leaving sores and Dr. vB just wants to do a brace check to make sure everything is going okay.

This month is ridiculously busy but I am thankful for every single day that I wake up to my beautiful angel.

Monday, May 10, 2010

Peace, Love, & AMC.

Just wanted to update from our trip to Shriners last Thursday. We picked up Bailey's new braces(as seen to the left), which makes walking a bit easier for her. She's still walking on the side of her foot but with the braces it is much better. Dr. vB said with club feet it often re-occurs after correction (casting/bracing) and that a tendon transfer is sometimes necessary. He wants to try out the new braces with night time straps until August and if she is still walking on the side of her foot as much then he will try the Ponseti method(casting) again this time for 6 or more weeks and if after that it re-occurs again she will need a tendon transfer around age 3. As always we're hoping to not go that route!

We got to meet up with some AMC family while we were in Philly and as always it was amazing. Met 2 new family's and saw 2 family's we've already met again. I love those little get togethers. :)

We follow up with GI tomorrow about Bailey's feeding tube since it has been a little over a month since the tube was put in. She's eating a little more but still not enough and I know she's packed on some pounds with the feeds. :) So I'm interested to see her weight and the plan after this. G tube or no G tube?

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."