The Big Send Off, A Breath of Fresh Air, and Lingering Questions

The Big Send Off, A Breath of Fresh Air, and Lingering Questions

Wednesday was a big, long day at CHP.  We had follow-up appointments in Pulmonology and in the Cerebral Palsy Clinic.  It was also the day that we were finally able to have our blood drawn for genetic testing and sent to Baylor College of Medicine.  Our first stop that day was to the lab at CHP. Elizabeth and I both had our blood drawn, and the tech packaged it up and sent it out for a Fed Ex Express Delivery.  So, now we wait, and hope and pray for answers and for the best. Elizabeth and I had matching "battle wounds" and proudly displayed them.

Our appointment with Pulmonology was with Dr. Forno.  He is really great, and we really like him.  He cleared Elizabeth for surgery, and he again put a plan in place should any breathing difficulties arise as a result of anesthesia during her G-Tube surgery.  It was a truly a breath of fresh air to hear Dr. Forno say that he also feels that the G-Tube is the best thing that we can do for Elizabeth to keep her well and to help her grow. He also said that he felt that it would improve her breathing, reduce coughing and that if that was the case we could consider reducing the use of her Flovent to only during cough and cold season. We will of course have to wait and see how things go after having the G-Tube placed in Elizabeth. It is possible that her coughing and breathing issues are related to her aspiration.  If that is the case, we should see her breathing easier and coughing less once she gets the G-Tube.  It is also entirely possible that her coughing and breathing difficulties are caused by her immune deficiencies and recurrent upper respiratory infections.  If that is the case, then the G-Tube will provide little aid for breathing and coughing.  So, we will watch and wait, as always.  Dr. Forno would like to see Elizabeth again in July to assess her breathing and coughing, as well as her progress on the G-Tube.  We may consider a special vest for Elizabeth in the future if the coughing persists in order to help her cough be more productive.  In the meantime, we will continue with the Flovent daily, the Albuterol as needed, and just to watch and see how her breathing and coughing changes in the next few months.  Hopefully, the change is for the better. 

We had a few hours to kill after the Pulmonology appointment, so mom and I went to the cafeteria to grab something to eat.  We were surprised when we left the cafeteria and headed back to the main lobby to find that the Disney Store had tables set up that were FULL of a wide variety of Disney toys. One of the volunteers saw Elizabeth and motioned us over to the table.  There was already a line of kids swarming around.  The volunteer said to choose a toy for Elizabeth, and that the toys were donated for the kids from the Disney Store.  I looked on the table and saw a Princess Sophia doll, and I picked it up for Elizabeth.  She LOVES Princess Sophia.  I showed her the box, and Elizabeth reached out for the doll and cracked a smile on her little face.  I took the doll out of the package and handed it to her.  She held onto it in her stroller. It is a beautiful doll, and it sings.  So, THANK YOU to the Disney Store for the awesome surprise.

Our last appointment was with the Cerebral Palsy Clinic.  These appointments are always so long, because you see multiple providers.  We saw a nurse, a social worker, the PT, the OT, two Speech and Language Therapists, a fellow and Dr. Patterson.  They all have good insight and suggestions, and we spent most of the appointment updating them about the numerous developments that have taken place since we first saw them in September.  If you've been following Elizabeth's story, you may remember that one of our first big visits was to this clinic.  In September, they had said that they did not feel that she had Cerebral Palsy, and they did not feel that she was a typical case. They said that they did want to follow up with her though and watch her progress, because sometimes it takes time to make an official diagnosis of Cerebral Palsy.  So, since September, we have continued to see delays despite growth in some areas of development, and we also know about her different forms of brain damage that were found on the October brain MRI.  We discussed all of these things and what that means for Elizabeth.  We also discussed our rehabilitative equipment needs, plans for services, etc.  At this time, the insurance won't approve any more adaptive/ rehabilitative equipment since we just got the gait trainer. The gain trainer is great, but Elizabeth has a fairly low tolerance because it is a lot of work for her.  So, we need a supportive stroller, but they are expensive, and again we've been denied by insurance because we just got a gait trainer.  (One a side note, I was put into contact with an amazing mom of a beautiful special needs girl named, Bella, by my new friend, Alisha Hoover Cooper--who you may know as the mom of the amazing Avery Sue.  Anyway, this mom is giving away Bella's Adaptive stroller, because she outgrew it. It is exactly like the one we were looking for to get for Elizabeth, so I am working on meeting up with her to get it and test it out.  We are truly surrounded by angels, as these strollers are very expensive. A prayer answered indeed!) We decided that our next piece of equipment for Elizabeth needs to be a supportive stroller or a wheelchair to increase her mobility.  We are hoping that the G-Tube makes her grow and makes her stronger so that she can increase her tolerance in the gait trainer.  The team also told us that since she was able to sit by age two that it dramatically increase the likelihood that she will walk someday, but we just don't know when.  In the meantime, until she is able to walk, or tolerate the gait trainer for long periods, a wheelchair may be our best option to allow her to be independent and have mobility.  So, we are going to revisit that idea as we follow up with the clinic and continue to monitor Elizabeth's progress. 

The big question that we talked about that day and that still lingers is this:  Does Elizabeth have Cerebral Palsy?  Dr. Patterson answered the question.  She said that Elizabeth meets all of the criteria for Cerebral Palsy. She has brain damage, developmental delay and speech delays.  However, they still do not view her as a typical case due to her many other medical issues.  Since the genetic testing has been ordered and approved and we are waiting for answers, the Cerebral Palsy clinic team is also waiting on those results before they formally diagnose Elizabeth with having Cerebral Palsy.  If the genetic testing reveals an overarching diagnosis for her brain damage, developmental delays, speech delays and other medical issues, then there really is no need to add Cerebral Palsy to the list, because the symptoms can be explained by something else.  However, if the genetic testing reveals a diagnosis that does not explain the three key diagnostic criteria, then they will formally diagnose her with Cerebral Palsy.  So, again we wait, and the question lingers, and we don't have a formal diagnosis even though she meets all of the criteria.  Sounds so familiar, and we have definitely heard that before.  We will follow up with the clinic in six months.

On Friday the 20th, we had our last visit with Elizabeth's pediatrician, Dr. Vigliotti.  He is sadly leaving the practice in  June, and we will be transitioning Elizabeth's care to Dr. Kisloff.  We love them both, but Dr. Vigliotti has been amazing.  We will be very sad to see him go.  He gave me a big hug before I left the office, and I will say that I am definitely going to miss him.  It was just a weight check, and her weight is the same as she was before she had pneumonia, which is good.  She lost several ounces when she was sick. She is still at the very bottom of the growth chart.  Dr. Vigliotti agrees that the G-Tube is a good decision for Elizabeth.

If you're looking for something to do this Sunday and you are in the area, the Team Elizabeth Jeanne committee has put together a benefit that will be this Sunday, March 22 from 1-7 p.m. at the Holy Trinity Lutheran Church in Chicora.  My cousins and family, as well as many friends and colleagues, have worked really hard to put it all together.  They have done everything to plan for this event, and we are grateful that they would want to do this for Elizabeth.  The only thing they have asked us to do is to show up, and so we will be there.  They are putting on a spaghetti dinner with raffle items and entertainment.  The cost is $10 for adults, $5 for kids, and there is take out available.  The generosity and angels surrounding our sweet girl is just amazing.  We are very grateful to all of you.