6-12-09 Home SWEET Home and Doing Well ; )

Sorry again about the delay in updates.  It’s been so busy, as usual.  But the REALLY good news is Ally is HOME and doing WONDERFUL!!!!

Ally came home from the hospital on Monday, June 8th at 11 AM after 6 days at Childrens Memorial with a cold bug that turned into pneumonia, and some teething complications.  It is amazing that we got out of there so early on a Monday.  A special thanks to Dr. Epting, Dr. Melissa Brennan, APN Shamik Shah , and hospital staff for making this miracle happen so early in the day.  Ally had a good Saturday and Sunday, and was really ready to be home in her own bed (me too!).  Unfortunately, “I” had a really rough night on Sunday in the hospital.  There was some major difficulty with the night respiratory manager with scheduling.  While I was trying to sort this all out and advocate for a therpist that knows Ally and our routine well, there was a code in the picu with a child I knew. This was very difficult for me to handle emotionally, but nothing at all compared to what the child and parents went through.  Luckily, everything turned out okay with the child.  Billy came back to the hospital for emotional support and I later supported the family in the best way I knew how.  These life and death situations hit a bit too close to home, and are very scary, but I try to remember that God is in control and each of us will go to heaven when it is our time.  In the meantime, we must cherish every moment we have with our loved ones.

My mom picked Ally and I up from the hospital on Monday, so that Billy could work.  I got to take a shower, unpack a tiny bit, and off to Ally’s school to train her new teachers and therapists on her Dynavox EyeMax Computer (otherwise it would have been in September).  I would not have done this if Ally was having trouble, but she was very stable and we used her bi-pap breathing machine to give her some extra support.  After the training, Ally had a breathing treatment at home, I ate for the first time, napped, and woke up for another breathing treatment before Ally’s bedtime.  It was nice sleeping at home, but unfortunately most of the week I dreamt that we were in the hospital still waking up talking in my sleep.  It is getting better though.

Tuesday, Ally and I mostly relaxed and did a couple of extra breathing treatments.  Ally’s homebound teacher, Ms. Candy, came and had some fun with her at 3 pm.  I’m very lucky that my sister Sandi took Melissa to have lots of fun at her house for the week.  I miss her greatly, but she is having a TON of fun and I’m catching up on my energy.  Kristyn had school and Billy went to work.  My amazing Mom made me a great lunch and dinner for our family.  I often forget to eat and was really too emotionally drained to cook.  I am so grateful to have such a great family and supportive friends – thanks everyone!

Wednesday we had our SUPER Nurse Maribel. Ally had a great, real bath.  She also did Music Therapy and School at home.  I tried to catch up with bills, cleaning, medical calls, computer stuff….  During home school, Ally did a wonderful job using her Dynavox computer with her eyes.

Thursday was a nice day.  We had Nurse Maribel again to take the best care of Ally.  Kristyn (my almost 13 year old) and I had a Mommy/Daughter Day.  We ran some errands, got our hair cut, shopped for sandals, and went to the lovely dentist office.  That last part was no fun at all, but part of my goal of taking better care of myself.  Kristyn will also be getting braces in the near future.

Friday was a busy, busy day.  Ally is pretty much back to her baseline, so we forged ahead.  We had another great nurse from Childrens’ NICU, Kate.  She is a friend of Maribels and has been with us about 2 months.  Ally had art therapy, 45 minute nap, and then speech.  She created an incredible finger painting with Joan.  Then she did well with her Dynavox computer during speech.  Check out the videos on the right side of her webpage, or on You Tube… http://www.youtube.com/results?search_type=&search_query=tina61775&aq=f

 

 

After Speech, we headed out to the Franklin Park Fire Department to do a 2nd Kick Off for the MDA Boot Walk.  Three different shifts will be going out and we are trying to meet and thank all three shifts this year.  This is our third year visiting different fire stations.  I brought brownies and Ally seemed to really enjoy being out of the house.  After the fire department, we met my mother-in-law and sister-in-law for Mexican lunch.  Ally did wonderful the entire time without needing bi-pap at all.  She is one strong cookie and I’m amazed at how quick she bounced back with such aggressive treatments.  I’m so thankful to our wonderful team of home nurses and the hospital staff at Childrens.  I am hoping that some of Ally’s plan of care will start to carry forward to the other SMA families (every child is different, but it could be used as a reference with Dr. Schroth’s neuro-muscular protocol) .  I did ask the families’ permission to share names as many of you offer well wishes and prayers.  Mariah Osborne is in Room 210, and is 10 months old with type 1 SMA.  Feel free to send her FREE e-cards thru the Childrens website http://childrensmemorial.org/ecard/default.aspx .  Her parents could really use the support.  The second family has Emily Rios who is 17 months old and diagnosed with Type 2.  She is home and the family is settling into a routine.  We look forward to all the girls meeting soon.

Thanks again for everyone’s well wishes and support.

Hope you enjoy the new pictures and videos!

*I am also adding some “good” hospital pics to the last blog post.  Some really cute ones of Melissa too.*

Tina, Ally and Family