Get used to the Stairs

The month of October is Spina Bifida Awareness Month.  In honor of this grand event, our family has decided to more fully engage in our devotion to spina bifida.  So far, we've been successful.  I think I need to reassess my goals to fit my life.  Instead of becoming thinner, cleaner, or nicer, I should set the following goals: Drive to the hospital daily Give to the pharmacy weekly Attend surgery monthly Lift weights (Davey) thirty times a day Raise blood pressure Call insurance every other day Forget to pick up kids Mon., Thurs. Listen to talk radio 2 hrs/day Cath, enema, and bath children as little as possible Sleep less Success, I accomplished my goals! Maggie will have the ETV- CPC surgery tomorrow.  Her ventricles are continuing to grow.  We are hopeful this surgery will work like a shunt but will prevent the need for a shunt.  It's amazing how quickly the treatment for hydrocephalus has changed since Davey was born. ...

Happy Birthday Mom!  Thanks for being my example and rock.  So glad you were born and that you are my momma.  I long to live closer and celebrate this happy day with you! Happy Anniversary to Maggie and me.  Six months ago today we had our fetal surgery.  I remember saying before surgery, "I just wish it was six months from now."  My hope then was that everything would be 'normal' six months later.  Well that day is here, and I'm so glad to be at  home listening to Maggie sigh and grunt as she swings, rather than laying in a hospital in Houston hoping for a miracle.  Thank you my dear family, friends, reporters, doctors, nurses and strangers who showed amazing care and support.  It seems so long ago.  Good thing we had a great news crew who documented way too much, so I'll never be able to forget :)  This line makes me cringe, "It's something every parent does for their kid, no matter what the kid."  What??? ...

I asked Matt what to write for the post. This was his reply, "Surgery went well. Blah, blah blah." He's so eloquent. The plastic surgeon, Dr. Faizi Siddiqi, said things seem good. Now that the infection is gone, the back will hopefully heal in a couple weeks. The grossest part is the two drainage tubes coming out of her back. I love little Maggie, but those tubes stretch my limits of affection. Every time we move her, it looks like they are going to slide out. She'll have them in for a couple days to drain any puss/fluids that might build up under her skin. It's tough to see her corded up again. Of course we can handle it, but it's hard. And she needs a bath! She's never had one and it's starting to catch up with her. My hope is that our posts are helpful for other families with spina bifida kids. Reading other blogs has been a great resource for us. When your pregnant with a child with spina bifida, it's hard to know what to ...

The hospital staff was sad to see Millie leave today, but we have never been happier to say goodbye to a group of kindhearted, sweet people. Traffic was never lighter and the drive was never easier than it was coming back from the hospital. Millie keeps progressing like the six million dollar man and just continues getting better, stronger, and faster. Her doctors reminded her upon her release today that she'll feel like doing things in the coming days/weeks/months, but she has to discipline herself to be a sloth. She can't really go anywhere, or do much of anything other than stay in bed and occasionally get up for carefully supervised grooming activities. It sounds kind of like being in prison. Millie asked me how I thought I would be able to handle bed rest and I said I thought I would be well suited to it. I've always been naturally inclined to sloth-like activities. That's one of the beauties of our marriage, where one is weak the other is strong. I'll...

Millie's brother and sister-in-law presented her with the most wonderful shock the other morning. They surprised her by flying her dad down to be with her for the weekend. When he came into her room she just started crying. As difficult as this process has been, it has been tempered by the presence of caring and attentive friends and family. We're grateful that while we're so busy at the hospital our son and dear daughters are in such good hands. I can only hope that our pet turtle is faring as well in our absence. Everything is progressing exceptionally well. Our fetal surgery team has gone to Austin for a conference, but Millie is on track for discharge on Sunday. Her pain is sill omnipresent, but every day it gets a little better. She'll be sent to her brother's house tomorrow where she'll be on strict bed rest. She returns for a followup appointment on Friday. Her folks will head home Sunday night, then Davey and I will fly out Monday morning. ...

We were brought to Millie as she was being wheeled up to her recovery room. She looked beautiful. She's sort of been coming around but they have her on a medication through her IV that will prevent contractions that makes her very groggy. Her pain has been high, but they just adjusted her epidural and it seems to be a bit better. When she first heard my voice she tried to smile. She kept saying a word that we couldn't understand until one of the doctors realized she was saying, "Maggie, Maggie." We reassured her that Maggie was just fine. The next few hours/days/weeks are important as everything done is aimed at keeping Millie and Maggie stable and preventing preterm labor. I'm so proud of my dear wife. In her groggy state she still shows some of her spunk and sass. Her mom went and got a cookie and when she came back to tell me we heard a voice say, "whaa whaa, rub it in." That's our girl. The epidural is working better now, she's resti...

The doctors were right on time this morning. Millie was so brave as they placed her epidural (it will be used for pain management following the surgery). All of the doctors comment on Millie's beauty as it pertains to their specialties. They'll tell her that her spine is lovely, or her veins are wonderful. She has a firm and well shaped trachea, and her birth canal is long and shapely. I always knew Millie's beauty was more than just skin deep, now it's been medically confirmed that she's gorgeous at an internal anatomical level as well. Millie's mom showed us a sign a friend had made. It says, "20, 37" over the picture of some boxing gloves with the name "Maggie" written on them. It represents Millie's goal to be one of the 20% of the moms undergoing fetal surgery to deliver at 37 weeks. At 7:30 the doctors wheeled Millie down to the operating room. Her mom and I said goodbye to her in the hall. She was scared but incredibly c...

Yesterday, Friday, Educators Mutual called us at 12:30 to tell us that we'd been denied once more.  Sad, mad.  Then at 4:30 on Friday we got another call saying we'd been approved.  Finally, an independent reviewer determined that the surgery was NOT experimental.  What a genius!  The insurance went over all the details to make sure we understood that it was "not in network" and that they would only cover 80% of the allowed amounts.  The 20% and anything over the allowed amount was ours to pay.  We didn't care.  This news meant we could do the surgery!  Thank you Educators Mutual. I immediately called Childrens Memorial Hermann Hospital, so they wouldn't cancel the operating room for Tuesday.  They too had faith that it would work out and hadn't cancelled the surgery yet.  Then I called the news to give them the latest for their 5:00 story.  Then I called my mom.  That was a sweet phone call.  I know this ...