Elliott Hampton

Elliott Hampton
Elliott Hampton

Thursday, January 26, 2012

Conversations with E

****go to www.ktbwalks.org/team/elliott to support or join Elliott's Entourage in the February 18th  Keep the Beat Walk to support the It's My Heart Foundation! *****

It has been a hectic week. First, I found out our beloved cardiologist, Dr. Petit, is moving to Atlanta. I took the news pretty hard. We loved Dr. Petit from the moment we met him in the NICU. He is not only a stellar cardiologist in the technical sense, but also in terms of bedside manner. From the start he treated me as a member of Elliott's team. He went to bat for me with the neonatologist when Elliott was in NICU, recognizing that E was ready to go home in my very capable hands. There are some lucky babies and mommas & daddies in Atlanta gaining a gem. Next, We had to decide who to go to next. I had several experiences with docs during Elliott's CVICU stay. Most were positive a couple were not so positive (mostly in terms of bedside manner). They were ALL booked through June. Elliott's follow up was to be in March. After I hung up with the scheduler, I lost it. I never would have expected to have such a dramatic reaction. What? I am sure many of you who know me well are not surprised. Me, dramatic? Never! Anyway, after I collected myself and developed a list of names, I called back. Of course, they were now closed. About ten minutes later, the scheduler called me back. She said I tugged at her heart strings and she found an opening with the Chief of Cardiology. Although it is at the end of April, I took it. I called her supervisor to express my gratitude with her service.

Next up: Physical Therapy. I understood that they would call me to schedule E's PT. Yet it had been two weeks with no call. Frankly, the home stretching program is a bit disturbing, as E fights it and I am fearful of breaking his neck. He is a strong little booger. As it turns out, there has been a paperwork issue and the angel who usually handles all of that is out on medical leave. I don't use that term, angel, lightly. Linda was so incredibly accommodating with scheduling Elliott's X-rays and PT eval. Anyway, blah blah coordinating with pediatrician to fax this and that, we got to the point that they would even discuss scheduling with me. Of course, only mid morning appointments were available. Not possible. I would have to cancel therapy with my kids to take Elliott to therapy. Then the grey fog of momma guilt set in. It was thick. Am I really choosing the kids at school over my very own son? Ugh. Well, a bit later she called back with a time slot at 4:15 on Tuesdays. It's not with the sweet PT who did the eval, but it is the perfect day and time!

This week, Elliott has had play dates so graciously hosted my friend, Michelle. Today, he sat by himself while playing with Corbin!

"See, Elliott, this is how you do it. You try!" Corbin is a very good teacher.

Corbin decided that since his Hungry Alligator toy was in Elliott's capable hands, it was safe for him to explore the house in search of mischief

He also had a terrific conversation with his Aunt Amanda. I believe they were discussing the hard glottal attacks and bilabial fricatives (excuse the dorky speechie terminology).

****go to www.ktbwalks.org/team/elliott to support or join Elliott's Entourage in the February 18th  Keep the Beat Walk to support the It's My Heart Foundation! *****

- Posted using BlogPress from my iPhone

Thursday, January 19, 2012

Fit for a helmet

Elliott got to wear a super cool gnome balaclava today while the orthotist took measurements using a "soft" laser. I am reasonably certain insurance won't cover it, since Elliott (thankfully) exhibits minimal facial involvement. Therefore, I was able to negotiate $300 off the cash price of over $3,500.00. I will commence Operation Helmet with the insurance company on Monday. We paid the down payment to get started with treatment now, rather than waiting the typical 45 day insurance review process. Helmet installation is scheduled for February 1st.

- Posted using BlogPress from my iPhone

Tuesday, January 17, 2012

Teichgraeber- update

Today is Elliott's appointment with Dr. Teichgraeber, craniofacial plastic surgeon. I didn't sleep well last night, due to anticipation and anxiety. I am not sure why this consult is so stress inducing. Wish us luck.

Helmet, helmet here we come. Dr. T recommended a helmet to be worn 23 hours a day for three months. Next stop: Orthotist.

The helmet costs about $3,750.00. Since Congress just ruled that Medicaid will no longer pay for helmets, many insurance companies are expected to terminate coverage, as well. One more bill to pay!

Post your helmet decorating ideas!

Tonight, I have my first Houston Junior League meeting. I will be committing myself to a significant chunk of volunteer work at Texas Children's Hospital. I am looking forward to beginning to chip away at the debt I owe Texas Children's Hospital for saving Elliott's life.

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Monday, January 16, 2012

Keep the Beat Heart Walk

Had Elliott been born just 20 years ago, he would not have made it to 3 months of age. Please support our team (aptly named Elliott's Entourage, by a Mrs. Robin Harmeson), as we support the research that saved the life of our little Elliott. Did you know that Congenital Heart Defects (CHD) affect more children and families each year than all childhood cancers combined? Yet the funding for research on CHD amounts to a fraction of that available for cancer. If you are able, come out and join us at the Keep the Beat walk!

I would like to invite you to participate as a donor for the Keep the Beat: Annual Congenital Heart Defect Awareness Walk. This is the sixth walk put on by It's My Heart. It's My Heart is a nation wide non-profit organization that supports, educates, and advocates for those affected by Congenital and Acquired Heart Defects. The walk will include a 5k walk, entertainment, live bands and the opportunity to socialize with everyone in the CHD community.

Thank you for all of your continued support and generosity! Please remember that all donations are 100% tax deductible.

Again, thank you for joining me on this journey in helping the CHD community. As always, remember to KEEP THE BEAT!

Elliott, Melanie and Mark (M2+E)

Thursday, January 12, 2012

I can upload videos!

Just had to test out the new video uploading capabilities on a quick break from updating IEPs!

YouTube Video

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Torticollis, Torticollis, Torticollis

Try saying that three times! Our man E has another couple of diagnoses: Torticollis and Plagiocephaly. I like to think that he will have to earn a credential for every diagnosis. He has MANY years of schooling ahead of him at this rate.

Torticollis is characterized by tilting of the head, usually due to tightening of the sternocleidomastoid, or collar/neck muscle. If you notice, Elliott's head is tilted to the right in many of his pictures. We had a physical therapy eval today at TCH. She confirmed our, and the pediatrician's suspicions.  How did he develop this? Who knows? Maybe it stemmed from his preferences in the womb, as he was always hanging out on my right side. Torticollis is very common, especially in kiddoes who have spent a span of time in NICU/ CVICU. His prognosis is excellent with intervention. We will be doing execises at home and seeing a physical therapist to work on stretching the neck muscles.  The PT also did the Peabody (an assessment of gross motor development). Elliott scored in the average range, which is pretty terrific, considering he was basically out of commission for the first month or so of his life! We are going to work on developing trunk rotation, and stretching his right arm, as well.

The second diagnosis is plagiocephaly, which is characterized by a flattening of the head. Elliott's head is flat on the back right side, secondary to the torticollis. The PT measured his head, and evaluated the measurements according to a set of tolerances. Elliott's degree of plagiocephaly factored into the severe range. I will be honest. This is literally nausea- inducing for me. I am trying to be mindful, but as I play the words over and over in my head, I feel literally nauseated. I am amassed with guilt for not having seen a PT earlier. I should have recognized it was so bad, rather than making excuses. ECI did not send a PT-- despite the Torticollis referral request. I should have pushed it. Anyway, we are seeing a pediatric craniofacial plastic surgeon in the med center next week.  I am so glad Mark will be here.

Thursday, January 5, 2012

Blogpress is back!

I am afraid to get my hopes up. I have just updated my favorite blogging app and I couldn't resist testing it out on my lunch break. Elliott loves carrots and sweet potatoes!

Elliott loves meal time!

There's the cheeky little monkey smile that melts my heart

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