Monday, May 16, 2011

Here we go again...

BIG NEWS!  When we last saw Madie’s rehab doctor about a month ago I mentioned that we were interested and researching a chair for Madie to sit in on the floor.  We have been using an infant to toddler rocking chair and not only is she quickly outgrowing it, but it doesn’t really meet her needs.  Dr. Raji asked if we would be interested in coming back to Our Children’s House to meet with a therapist who could evaluate Madie and suggest a few products that would work best for her.  We, of course, were very interested coming back because a lot of equipment is not considered “medically necessary” and is not covered by insurance.  Since we will be paying out of pocket we wanted to make sure we picked the best product for Madie’s needs as well as something that will grow with her as she recovers.  So on May 3rd we took Madie back to OCH to meet with the therapist.  We picked out a chair that can be mounted in a standard chair but also has a base so she can sit on the floor with the rest of us.  As with most of the equipment she needs, it is a lengthy process to get it ordered and delivered.  So hopefully we will have it a month or two.   While we were at OCH I questioned the therapist as to whether or not Madie might benefit from another inpatient stay since she has progressed so much in the six months that we have been home.   She agreed and said she would mention it to Dr. Raji.  I assumed that when we went for our next follow up appointment in July we would discuss it more then but I got a phone call last week from OCH wanting to set up a time to bring Madie in!  So here we go again!!!  Our scheduled admit date is June 13th and we plan to stay for a couple of weeks.  We haven’t discussed it with Molly Michael yet because we want to have the ENTIRE two weeks planned for her so she doesn’t feel like we are going to leave for months again.  While we are nervous about our family being separated again, we are all VERY excited about this opportunity for Madie.  It will probably help a little if I shed a little light on Madie’s previous stay at OCH as to why we are so optimistic about her second shot at inpatient rehab.  I try not to overshare when it comes to difficult times in Madie’s recovery because I have faith that one day Madie will read all of these updates and I don’t want her to ever feel like she was a burden on any of us.  While I would have never picked this journey, God picked it for our family for a reason and we are happy to walk it with him.  That being said, our time at OCH following Madie’s discharge from Children’s was difficult.  She cried, a lot.  We held her, a lot.  Most days consisted of Matt or myself holding her from around 6:00 a.m. until she fell asleep around 8:00 p.m., with the exception of when she was in therapy.  When she was in therapy sometimes she cried (a lot) and sometimes we would spend her entire 30 minute session trying to get her hands open or get her arms pulled down away from her chest.  We had to keep her room very quiet and we had very little light in her room in order to keep stimulation at a minimum as her brain was slowly awaking from its coma.  Almost the entire time Madie was at OCH she was in a coma or near coma state.  She wasn’t smiling, she wasn’t really focusing and it was really hard to bear at times.  But, we remained positive and faithful that we would see improvements and we did, they were slow and small but they were there and we rejoiced each one.  Then about a week before we left, the crying slowed and we started to see small smiles, she started to focus on faces and then…it was time to go home.  But we were ready and I truly believe Madie was ready and needed to home with her family, together.  We have remained positive and as involved as we possibly can in Madie’s recovery since coming home in November.  She has made such amazing progress thanks in great part to her current therapist and I am so glad that they agree that this will be a tremendous benefit to her recovery.  We will put our current home health agencies on hold while we are gone and once she is back in inpatient therapy she will get ST, OT, PT at least once a day, five days a week.  I will be taking off work and spending most of the time in Dallas with Madie.  Matt will stay in Marshall and help keep Molly Michael busy.  We have had several friends offer to keep Molly Michael and we have one of her favorite babysitters that will be helping us all summer.  Matt will also bring her to Dallas on the weekends because I know Madie and I will miss them both so much.  Please pray that this next step in our journey is productive and positive. 
Look for lots of upcoming updates.  We have Madie’s follow up EEG (which I have a good feeling about) and a neurology appointment on June 2-3, Madie’s 2nd birthday party on June 11th (although her actual birthday isn’t until june 25th) and then OCH on the 13th.  We are so very thankful for each of you that continue to reads these updates, pray for Madie and our family and leave us encouraging messages.  We couldn’t do this without your love and support. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie