Last 10 days... Next 10 days

In the last 10 days we:

• Visited the ENT - - Gracie still has fluid in her ears... as usual. Not infected... just fluid. Since the doctor is new to Gracie, he wanted to try one more antibiotic and then threatened putting tubes back in. I tried explaining that this is her anatomy... what's in her ears is what's in her upper airway. She's far more comfortable without the tubes and constant drainage and tolerates her bone conduction aid far better (we saw a marked improvement the very next day following her tube removal!). We'll see. This may take a lot of convincing. He also wants to have a look-see at her airway (so does her pulmonologist) so he can form his own opinions about what kind of reconstruction is still required.
• Saw GI again... even more unimpressed with him this time. I have already requested to see a different doctor next time - preferably the head of the department. At this visit, I was once again told that she needs more calories. This time, I actually rolled my eyes at him and said something to the effect of, "Look, I am a fairly intelligent person... I get that. I need you, as her doctor, to help us find out why it's so difficult to feed her... why is she in pain, why does she vomit, why does her pacemaker seem to want to jump out of her side after two ounces? Why can I pump her full calories for several days and then she hits a wall where she just can't seem to take any more for days on end? There are a million questions that I need answered and I don't need you to tell me that she needs more calories." I am quite certain he'll be thrilled not to see us again! He did order a bevy of tests: upper GI, swallow study (this is a waste...), Gastric Emptying - - she's has all of these MULTIPLE times, but everyone wants their own reports.
• Had our first visit with the new Neurologist: LOVE the new doctor! Only need to see her every four months or so... wish she was also a GI doc! She gave me a couple of referrals for Behavioral Pediatricians and Endocrinologists... I have yet to call and make those appointments.
• Saw the Pulmonologist: He ordered a sweat test to rule out Cystic Fibrosis... only because of the multiple GI issues and constant secretions. It's been mentioned a handful of times by other physicians over the last 18 months, but no one ever ordered it. Neither the doctor, or I, feel that this is a possibility, but since there are a lot of similarities with Gracie's symptoms, he would feel better ruling it out. We see him again this Thursday as a follow-up for her previous respiratory infection and to discuss release to school (once nursing is established) and release back to the therapy clinics.
• Had the SELPA (Special Education Local Plan Area) nurse come to our home to meet Gracie and discuss her medical needs for school. This was set-up due to the problems I encountered on the program tour in January. This meeting was very positive and I feel like we are finally headed in the right direction... and with support.
• Had a lengthy intake interview with the nursing agency to set-up a plan of treatment for Gracie.
• Interviewed (and selected) a day nurse to start once all insurance authorizations are in place. Cross your fingers... I truly cannot stand this process. It's exhausting to build the trust and rapport needed to have someone in your home for eight hours a day, let alone have them take care of your child.

There are positives: This will 1) allow Gracie to attend school once placement is finalized and 2) allow me to be a better mother to both of my kids. Because Gracie is not mobile and Preston is SUPER mobile, I can only take them places in the stroller or car. In other words, we've (they've) been limited on park-time (weather permitting) and any other outing that would allow each of them freedom to play. If Preston gets up to play, Gracie wants up too. I can't be in two places at once, so it's impossible to do without a second set of responsible hands. It is my hope that once a trusted nurse is in place and Gracie's in school, Preston and I can have some good, quality time together where he is not constantly waiting for his sister's needs to be met first. Playgroups, library time, a tumbling class for my little daredevil (thanks for the suggestion, Helen!) ... I have a wish list that's growing rapidly!

Since Gracie was born, we've constantly had people in and out of our home for therapy, school, etc. Once she required nursing care, then all privacy went away. Granted, we were very lucky to have had a wonderful nurse with us for over 3 1/2 years who truly loved Gracie and was always so respectful of our home, privacy, etc, but it wasn't easy to constantly feel as though our lives were on display. It's been a nice break these last several months to have our space be our own - - it's something we've not known for almost six years. It is time, however, to have that help again... Gracie needs it, Preston needs it and I (yes, I'll admit it) need it, too. The new nurse will start part-time and then if it works out, we'll have her full-time.

In the next 10 days:

• Pulmonology
• Pacemaker Check
• Cardiology
• ENT
• Intake interview with our new Regional Center worker
• New nurse should be starting
• Gracie's home-hospital teacher should finally be starting (as well as therapy evals for school)
• NANA and PAPA will visit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Papa is on leave from his service in Afghanistan... we are so excited to see him.