Sunday, May 20, 2012

Reesa Visits a Special Doctor in Pittsburgh

When we first found out that Reesa was diagnosed with Krabbe Leukodystrophy, we researched the disease and connected with other families in our situation. Almost all of the Krabbe families we spoke to recommended that we visit Dr. Maria Escolar at her Neurodevelopment of Rare Diseases clinic in Pittsburgh. Dr. Escolar has spent the last 13 years studying Krabbe among other rare diseases. In 13 years she has seen over 70 Krabbe patients which is more than anyone in the world (this shows how rare this disease is). Although there is no cure, Dr. Escolar helps maximize the patient's quality of life through medication and educates families about the disease, its progression and the types of equipment and therapy needed to keep the child comfortable. We knew that visiting Dr. Escolar was very important for Reesa, so we booked our trip immediately. We were extremely nervous as the trip was getting closer because the flight from Phoenix to Pittsburgh (with a 2 hour layover in Cincinnati) was an all day event.ytjytu Not only was this Reesa's first time on a plane but she was also extremely irritable. Reesa would cry for hours unless you bounced her legs up and down so we were prepared to bounce her on both flights. We packed up all of our gear and headed to the airport and to our surprise we couldn't believe how perfect Reesa was on the plane. She slept most of the flights and when she was awake she was as happy as could be. It was a very long day.We left Phoenix at 11am and arrived at our hotel in Pittsburgh at 10pm. We were exhausted and Reesa wasn't ready for bed because she slept all day plus she was off schedule because of the 3 hour time difference. We had a very early appointment in the morning so we needed to get some sleep. After rocking Reesa for about an hour we were laying her down in her pack-n-play and the next thing we new her G-tube came completely out of her stomach! We had to rush Reesa to the hospital and knew that we only had 30 minutes to get the tube back in or the hole would close up and Reesa would need surgery again. Long story short....after being at the hospital for 5 hours, they were able to re-insert the tube, and we got back to our hotel at 4am got about an hour of sleep and then our appointments with Dr. Escolar and her team began.
  The next 6 days consisted of tests and therapies ranging from spinal tap, MRI, hearing tests, vison test, and occupational, physical, and speech therapies and Reesa was a such a trooper through all of them.IMG_1009 IMG_0981 
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Dr. Escolar also started Reesa on new medications (Baclofen for spasticity and Neurontin for nerve pain) and the first day and we noticed a change immediately. Reesa started laughing, babbling and was full of smiles. We hadn't seen our baby girl like this in over a month. What was planned to be a two-day trip was extended to 6 days so that Dr. Escolar could adjust Reesa's medications each day and get her to a point where the meds were doing the best job of keeping her limber and comfortable. We will see Dr. Escolar again in three months so that she can evaluate how Ressa's motor skills are and to evaluate if she is regressing and what pace. Dr. Escolar and her staff were so professional and knowledgeable. She was able to restore peace and comfort to Reesa's life (and ours).
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While in Pittsburgh, we had a little bit of down time, so we took Reesa to the botanical gardens and had a ride on the merry-go-round!

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28 comments:

  1. You guys are the most amazing parents with the most incredible daughter (and the best Grammy as well)! This trip was such a blessing! Glad you got your little angel back to being herself, full of smiles and giggles. Love her, love you all, thanks for posting these updates!

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  2. Tifani Brakke-StraneMay 20, 2012 at 10:29 AM

    Your precious daughter is an absolute angel, and your family is an inspiration to all of us around you.
    Sending so much love to all of you...

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  3. You are all so amazing. Your strength and faith is such an incredible example to others. Praying for you all!

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  4. amber tillinghastMay 20, 2012 at 3:38 PM

    Awesome stuff!! I am so glad she is feeling comfortable and happy and that you are all making happy memories.

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  5. I'm so glad to hear things are getting better. She is adorable and you are such great parents.

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  6. You are an amazing family! And Reesa is so lucky to have such wonderful parents and family/friends! Praying for you all....everyday! Hugs!!! Love, Liz (Chris' cousin)

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  7. My name is Kathy Davis. I commented on your Blog a couple weeks ago about my 9 month old Maddie. She was diagnosed with Krabbe on may 8 2012. Dr. Escolar recently contacted us about her program. My husband and I are torn about what to do. We just don't want our little girl to go through so many more tests. We were very skeptically about this study making a difference in maddies disease but from what I read it has helped your baby girl. Are y'all 100% glad you went? My email kaff07rdms@gmail.com

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    1. I am Reesa's grammy and went to Pittsburgh with her parents. Dr Escolar and her staff are amazing We saw immediate changes in Reesa. Dr Escolar doesn't pretend to extend the lives of these babies, but she can make a difference in the quality of their life. I think it was a very worthwhile trip.
      Grammy Flo

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  8. Hi guys! I've been thinking of you all a lot since Sean contacted me. I've been meaning to call to check up on you all, but Ryder was hospitalized again and life has been hectic as ever :/ I'm glad Reesa has some pain relief. Have you contacted Camara Cassin yet? She is such an amazing support and so very knowledgable about Krabbe. She had a beautiful daughter, Anaya who passed away from Krabbe. Think of you all often & hope we can get together some day soon;)

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  9. Hi Jamie & Sean. Been in contact w/ Dad...we still pray for you and think of you a lot. THANK GOD to the 100th power for Grammy Flo!!!!!! Enjoy every minute - Reesa is so cute!
    Glenn, Laurie, Bobby & Amy.

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  10. I am a mother of a special needs child but I can't even begin to understand all you are going through. What I can understand is how much you love baby Reesa with everything you have and that's what matters most. She is a beautiful precious gift from God who I'm sure has made an impact on many, many lives. My prayers are with all of you. God bless you.

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