Monday, May 30, 2011

Ballet Recital

3 Months and 1 week after the day she was put on a ventilator, Hailey participated in her end of the year Ballet Recital which was held at the Maryland Theatre. This whole week has really been almost a period at the end of the journey sort of. On top of the recital, Hailey has her graduation program from her 3 year old preschool class tomorrow. The fact that she was able to rejoin both of these programs she loved in time for the end of the year is amazing and we're so thankful! I'll be sure to take lots of pictures of her "graduation", but for now, enjoy some ballet pictures!

Their show was called "Squeeky the Mouse". I told her before she joined her dance class "I'd tell you to break a leg, but with your luck you would!" (Getting GBS is luck of the draw really. Only 1 in 100,000 odds and she hit it)

Hailey and her friend. Hailey is on the left.

The whole class during the dress rehearsal.

Hailey with her "Break a Leg" Bouquet after the show.

Thursday, May 19, 2011

Amazing Progress

I haven't been good about writing updates. There just really hasn't been much news to report...until now!

Wednesday when I was sitting in the lobby of the therapy office, the receptionist called my name and told me Hailey's Occupational Therapist wanted to see me in the back. that a good thing, or a bad thing?! I gathered all my ribbon and materials I was working with and went into the therapy room. Her therapist then informed me she was having a hard time finding something to do with Hailey that was hard for her to do. She said even the things Hailey didn't know how to do when they first would do it, by a couple of times of trying it, she would be able to execute it with ease. The therapist said it shouldn't be hard for her to find things to do with the patient and when it is, that usually means its time to discharge the patient!! So, she is going to see Hailey on Monday and Tuesday of next week where they will concentrate on holding a pencil the correct way, this is the only thing Hailey resorts to "fisting" normally. Sometimes she'll hold it the proper way, and transitioning from toddler fisting to holding it correctly is age appropriate, sooo...Tuesday will be Hailey's LAST DAY of Occupational Therapy! Hooray for Hailey making great progress!!

Hailey's Physical Therapist tested her today to see where Hailey's strength was and to see if she would still need to see her. My husband went to therapy with Hailey today. He told me that the therapist said Hailey is making great progress but she still sees a weakness in her left leg. She stumbles some with that leg so for now, she will still be seeing Hailey twice a week. She said she has her scheduled for another month, but it might only be a couple of weeks. We will see. Whatever Hailey needs we'll do!

Tomorrow Hailey has a follow up appointment with her pediatrician for a recheck on everything. I am sure he will be testing her reflexes as they were still very weak when we saw him last, which was only a few days out of the hospital. I am going to ask about her nerve blocker medication, how much longer he thinks she'll require it. Dave and I both feel like she probably doesn't need it anymore and she never says anything is bothering her, however, maybe that's because she is on the medication. We'll see what the doctor says. I got a letter from our insurance company, I'll bring it with to the drs, that says we have to fill that particular medication in 90 day supplies because its a long term labeled medication. If we do fill it again in a 30 day supply we'll be subjected to a higher copay. Of course the letter doesn't state what that amount would be.

Hailey has made amazing progress this past month since being discharged from the hospital! She has started back in preschool one day a week. She has her end of the year picnic for that next week. She also started back in her ballet classes and has a dress rehearsal and then her recital next weekend at the Maryland Theatre! She is so excited (so am I!)! It amazes me how she has fit right back into her normal life. We have been blessed by the pace of her recovery!

Two weekends ago, after vowing to do more things as a family, we took a day trip to Gettysburg, PA to visit "The Land of Little Horses". It's the most beautiful petting farm you will find! We all had a blast (even the older boys who aren't as in love with horses as Hailey is)! I'll end this post with a couple of pictures!

Sunday, May 1, 2011

Our week in review

I was going to post this picture at the end of the entry, but it keeps putting it at the top!! This picture makes my heart so happy!! Hailey got a bike for her birthday! Her therapist thought it was a great idea and would be great therapy for her. She has actually started peddling herself! This is from a walk we took this past week with one of our neighbor friends! Good times!

Hailey had a great week! We had therapy Mon-Wed this week. Physical therapy was supposed to be in the pool on Tuesday, but we received a phone call that it would be "on land" instead because a light bulb over the pool burst and there was some glass in the pool. Hailey was a little disappointed (as was I! I am interested in watching and seeing what they'll be doing with her).

They've been working a lot on her fine motor skills. Coloring with smaller pieces of crayons to promote use of her pincher grasp instead of fisting the crayon. They are harping on this, however, I'm not 100% sure, but I don't even think she was using her pincher grasp before all this happened to color and write. If she was, it was only sometimes so she was still transitioning to this milestone. It won't hurt though to have them encourage it. They also were working with clothes pins to strengthen her fingers and playing with putty for the same purpose. The Easter Bunny brought Hailey some playdoh in her basket. She must have realized this would serve the same purpose!

After therapy one day this week we visited one of her preschool teachers. Hailey had so much fun playing with her younger son! They didn't know she was walking yet and Hailey loved showing it off up and down their hallway! It was a good time!

Other milestones this week: Hailey started back in dance class! She did fabulous! I am able to watch on the television in the lobby what's going on in the studio and Hailey did wonderfully! There is only a couple of things like skipping where Hailey can do it, she's just slower than the rest of her friends. It's the same with her running. She's started trying to run again. It's more of a fast walk, marching looking thing. The great thing is, Hailey doesn't care/realize she is any different right now than the rest of her friends and she isn't letting it hold her back. Saturday we had pictures for dance. She initiated races in the studio and of course everytime she would lose, but just kept saying "Darn! You win again! Let's race again!" I am so happy that she isn't taking it hard.

Hailey has also requested to start back at school. There isn't many classes left (school lets out mid May) and after speaking with her teacher, we have obliged. She is only able to go one of the two days she would normally go as we have a therapy scheduled on the second day. She has her long therapy that afternoon though so I'm going to keep an eye to make sure the day isn't too much for her with everything. She can fatigue easily right now. Her therapists have said that Hailey is really good letting you know when she is tired and needs a rest though. It feels good to be back to "normal" somewhat.

To top off the week, I've got both the boys who have pink eye!! Ack! We just had it go through the house in January...every single one of us got it. Luckily I've got plenty of eye drops left from that showing and we've started treatment. I pray Hailey doesn't get it (It's one of the viruses she tested positive for in the hospital, although her eyes weren't pink...carrier maybe?)! I'm just so paranoid about her catching any kind of cold right now, as innocent as they may be. It's going to happen sooner or later, I know, and I also know she'll be fine, but it still has my nerves in a tizzy!

Much Love and Many Thanks to you all!